Clio in the Clinic: History in Medical Practice 9781442673014

Table of contents :
Contents
Illustrations
Acknowledgments
Contributors
Clio in the Clinic: An Introduction
Consulting the Past
The Night I Fell in Love with Clio
Speculum medicinae: Reflections of a Medievalist-Clinician
Facing Epidemics
A Wartime ‘Plague’ in Crotone
Plagues and Patients
Coping with the HIV/AIDS Epidemic
Reviving Defunct Diseases
‘La Crise’
Floating Kidneys
Historical Adventures in the Newborn Nursery: Forgotten Stories and Syndromes
Susan and the Simmonds-Sheehan Syndrome: Medicine, History, and Literatures
Recognizing New Diseases
The Histories of a History: The Boy, the Baron, and the Syndromes
Who Says You Have to Crawl before You Walk? Sudden Infant Death Syndrome, Crawling, and Medical History
Making a Diagnosis
An ‘Appallingly Sudden Death’ Explained Seventy-Six Years Later
One Blue Nun
Prescribing the ‘Right’ Treatment
William Withering's Wonderful Weed
Dr Heisenberg, Are You Certain about the Diagnosis?
Explaining Differences
Trust and the Tuskegee Experiments
Beware the Poor Historian
We Are All Historians: Thoughts about Doing Psychiatry
Confronting Futility
Timeless Desperation and Timely Measures
A Brief History of Timelessness in Medicine
How Medical History Helped Me (Almost) Love a V.A. Hospital
When Clio Falters
What Do You Know? Cancer, History, and Medical Practice
Seeing through Medical History
Index

Citation preview

CLIO IN THE CLINIC: HISTORY IN MEDICAL PRACTICE

Sometimes, history can solve a medical mystery; at other times, it can point to the right treatment or console a despairing doctor by demonstrating a timeless connection to unchanging aspects of human existence. In Clio in the Clinic, twenty-three doctors, each of whom is also an accomplished historian, write about the relevance of history to their practice of medicine. Their stories of clinical experiences provide new evidence for an old argument about the utility of history in the diagnosis and care of patients. The contributors to this volume hail from five countries and represent sixty years of training; the most senior completed medical school in 1943, the youngest in 2003. They include several internists, four pediatricians, two psychiatrists, two infectious-disease specialists, one neurologist, one emergentologist, and one surgeon. Topics include: history in the service of patients, the doctor-patient relationship, disease causation, administrative dilemmas, and the use of history to reflect on current trends in the practice of medicine. Many books make claims for the value of teaching history to future physicians, but none has explored the clinical experience of those doctors who are experts in history. Clio in the Clinic shows how knowledge of history can shape a physician's view of the profession and how it can be a surprising asset at the bedside for diagnosis and treatment. Not all the endings are happy, but these tales of medical life are written with insight, honesty, humor, and great affection for medicine, its history, and its people. JACALYN DUFFIN is a professor in the Faculty of Health Sciences, the Department of History, and the Department of Philosophy, and holds the Hannah Chair in the History of Medicine at Queen's University.

This page intentionally left blank

Clio in the Clinic: History in Medical Practice

Edited by Jacalyn Duffin

UNIVERSITY OF TORONTO PRESS Toronto Buffalo London

www.utppublishing.com © University of Toronto Press Incorporated 2005

Toronto Buffalo London Printed in Canada ISBN 0-8020-3854-9 (cloth) ISBN 0-8020-3798-4 (paper)

Printed on acid-free paper

Library and Archives Canada Cataloguing in Publication Clio in the clinic : history in medical practice / edited by Jacalyn Duffin. Includes bibliographical references and index. ISBN 0-8020-3854-9 (bound) ISBN 0-8020-3798-4 (pbk.) 1. Medicine - History. 2. Medical historians. Practice. I. Duffin, Jacalyn R133.C56 2005

610'.9

3. Medicine -

C2004-905733-2

Cover illustration and plate 1: Charles Meynier, French, 1768-1832. Clio, Muse of History, 1800. Oil on canvas, 273 x 176 cm. © The Cleveland Museum of Art, 2004. Severance and Greta Millikin Purchase Fund, 2003.6.5. University of Toronto Press acknowledges the financial assistance to its publishing program of the Canada Council for the Arts and the Ontario Arts Council. University of Toronto Press acknowledges the financial support for its publishing activities of the Government of Canada through the Book Publishing Industry Development Program (BPIDP).

For our patients

This page intentionally left blank

Contents

Illustrations xi Acknowledgments Contributors

xiii

xv

Clio in the Clinic: An Introduction 3 JACALYN DUFFIN

Consulting the Past The Night I Fell in Love with Clio 19 SHERWIN B. NULAND

Speculum medicinae: Reflections of a Medievalist-Clinician WALTON O. SCHALICK, III

Facing Epidemics A Wartime Tlague' in Crotone 49 JOHN CULE Plagues and Patients 56 ROBERT L. MARTENSEN

Coping with the HIV/AIDS Epidemic 73 CHARLES S. BRYAN

27

viii Contents Reviving Defunct Diseases 'La crise' 89 ANNE MARIE MOULIN

Floating Kidneys 92 SANDRA W. MOSS

Historical Adventures in the Newborn Nursery: Forgotten Stories and Syndromes 105 JEFFREY P. BAKER

Susan and the Simmonds-Sheehan Syndrome: Medicine, History, and Literatures 116 CARLA C. KEIRNS

Recognizing New Diseases The Histories of a History: The Boy, the Baron, and the Syndromes 131 MAX SHEIN Who Says You Have to Crawl before You Walk? Sudden Infant Death Syndrome, Crawling, and Medical History 146 HOWARD MARKEL

Making a Diagnosis An 'Appallingly Sudden Death' Explained Seventy-Six Years Later 161 T. JOCK MURRAY

One Blue Nun 170 JACALYN DUFFIN

Prescribing the 'Right' Treatment William Withering's Wonderful Weed 189 RICHARD J. KAHN

Dr Heisenberg, Are You Certain about the Diagnosis? 201 PAUL BERMAN

Contents ix

Explaining Differences Trust and the Tuskegee Experiments 213 JOEL D. HOWELL

Beware the Poor Historian 226 MARGARET HUMPHREYS

We Are All Historians: Thoughts about Doing Psychiatry 236 GARY S. BELKIN

Confronting Futility Timeless Desperation and Timely Measures 251 JOEL T. BRASLOW

A Brief History of Timelessness in Medicine 269 CHRISTOPHER CRENNER

How Medical History Helped Me (Almost) Love a V.A. Hospital 283 STEVEN J. PEITZMAN

When Clio Falters What Do You Know? Cancer, History, and Medical Practice 299 BARRON H. LERNER

Seeing through Medical History 308 RUSSELL C. MAULITZ

Index

319

This page intentionally left blank

Illustrations

1 2 3 4 5 6 7 8 9 10 11 12 13 14(a+b) 15 16 17 18 19 20 21 22 23 24 25 26 27

Clio 4 E-mail message 7 Clio 15 Professor and students, late fourteenth century 32 Examination of a child, twelfth century 36 A thirteenth-century patient 41 A medieval medical 'clinic' 42 The author in uniform 52 'Gay Freedom, 1970' 62 Theodore Brevard Hayne (1898-1930) 78 Hayne at work 79 Luke Fildes, 'The Doctor' 83 Displacement of the kidney 94 Corset application for floating kidneys 99 Operations for floating kidney 100 Healthy and infarcted pituitary 119 Susan's electrocardiograms 121 Figurine of Baron von Miinchhausen 135 Tummy Time' poster 148 'Back to Sleep' poster 149 'Back to Sleep' poster 150 Bess at age 7-8 months 153 Dr John Stewart (1848-1933) 162 Heinz bodies in red blood cells 177 Library, Pennsylvania Hospital 190 William Withering 193 Foxglove 195

xii Illustrations

28 29 30 31 32 33 34 35 36 37 38 39

Berman's Box 202 Manuscript, 1838 204 Manuscript, 1839 205 Jewish men at Ellis Island 229 College gym turned infirmary, 1918 231 Patton State Hospital, circa 1900 261 The author's parents operating, 1962 263 The author's parents, 1962 264 Timelessness #4,' by Matthew Scanlon 279 The old V.A. hospital, Philadelphia 286 Dr Steve and a patient 293 Pogo: 'We have met the enemy' 317

Acknowledgments

I am indebted to Jeffrey House of Oxford University Press and to Bill Harnum and Len Husband of the University of Toronto Press for their confidence in an idea that arrived through cyberspace in a less-thanhalf-baked form. Without their encouragement, I would not have found the nerve to send that e-mail message back in November 2001.1 thank John Harley Warner and Frank Huisman for asking their provocative questions about 'clinician's history' that eventually led to this exploration of 'historian's medicine/ For nearly two decades, Queen's University and Associated Medical Services Hannah Institute have sustained my endeavors in medical history; I am especially thankful for the privilege of that crucial sabbatical year. My family and friends - Bert Hansen, Carlos Prado, Ross Duffin, Beverly Simmons, Jessica Duffin Wolfe, Robert David Wolfe, and Cherrilyn Yalin - enthusiastically supported this project in many imaginative ways from the idealistically conceptual to the intensely practical. The contributors opened their private, medical lives to scrutiny with generous eagerness and curiosity. Incredibly busy people, they (and their families) put up with squeezing yet one more project into overflowing schedules, and they tolerated my goading and revising with good-natured grace. With gratitude and relief, I believe that we are still friends. In particular, I thank Steve Peitzman for a memorable dinner in Atlanta, when history, hypertension, hematology, mortality, and writing came together in a delightfully quirky way. This book is dedicated to our patients - real people all, though their names here are not - because they have taught us so much about history and its medicine too.

This page intentionally left blank

Contributors

Jeffrey P. Baker, MD, PhD, is Assistant Clinical Professor of Pediatrics at Duke University, as well as a medical historian specializing in the history of child health, vaccines, and neonatal technology. He is author of a history of early premature infant care, The Machine in the Nursery: Incubator Technology and the Origins of Newborn Intensive Care (Baltimore: Johns Hopkins UP, 1996). Gary S. Belkin, MD, PhD, is a psychiatrist. He serves as the Deputy Director of Psychiatry at Bellevue Hospital Center in New York City and on the faculty of the New York University School of Medicine. Since receiving a doctorate in the history of science from Harvard University, he has published papers using historical perspectives to explore various health policy issues, in particular to assess the contemporary uses of bioethics. He is also completing a book about the work of the Harvard Brain Death Committee as a way to think about issues of medicalization and its critique in the latter part of the twentieth century. Paul Berman, MD, lives in Amherst, Massachusetts, and is a solo practitioner of internal medicine in Easthampton. His interest in medical history was sparked by the discovery of a chest of eighteenth-century manuscripts written by a society of local doctors for a continuing medical education adventure (avant la lettre). His historical work has appeared in the Journal of the History of Medicine and Allied Sciences. He is an amateur landscape photographer. Joel T. Braslow, MD, PhD, is a psychiatrist and historian at UCLA. He treats patients with severe mental illness and currently has an NIMH

xvi Contributors

career development award to study the history of psychotropic medications. He is the author of the book Mental Ills and Bodily Cures: Psychiatric Treatment in the first Half of the Twentieth Century (U California P, 1997). Charles S. Bryan, MD, is a specialist in Infectious Diseases and member of the Department of Medicine, University of South Carolina School of Medicine, in Columbia, SC, where he also is the Director of the Center for Bioethics and Medical Humanities. Winner of the Osier Medal of the AAHM for the best student essay, his first historical article (of many) was published in the Bulletin of the History of Medicine. Other articles have appeared in medical journals including the Annals of Internal Medicine, Pharos, and the state medical journal, which he edits. He now serves as Secretary-Treasurer of the American Osier Society and is the author of many other historical articles and the books, including Osier: Inspirations from a Great Physician (Oxford UP, 1997) and A Most Satisfactory Man: The Story of Theodore Brevard Hayne, Last Martyr of Yellow Fever (U South Carolina P, 1996). With Mark Silverman and T. Jock Murray he is co-author of The Quotable Osier (American College of Physicians, 2003). Christopher Crenner, MD, PhD, is chair and associate professor in the Department of History and Philosophy of Medicine at the University of Kansas School of Medicine, and is a general internist who provides primary medical care to about 400 people in and around Kansas City. His historical work has been published in the Annals of Internal Medicine, the Bulletin of the History of Medicine, and the Journal of the History of Medicine and Allied Sciences, for which he serves as editor for book reviews. His book Private Practice: In the Early Twentieth-Century Medical Office of Dr. Richard Cabot is soon to appear with Johns Hopkins University Press. He spends the balance of his time reading aloud from the works of J.K. Rowling and Matt Christopher. John Cule, MA, MD (Cambridge), MRCS (Eng), FRCP (Edin), FRCGP, FSA, qualified in medicine at Trinity Hall, Cambridge, and King's College Hospital, London, during the Second World War. He teaches at the University of Wales College of Medicine and is an Honorary Fellow of the Royal Society of Medicine. A former World President of the International Society for the History of Medicine, he now edits its journal, Vesalius. He has also presided over the Osier Club of London, the History of Medicine Society of Wales, and the British Society for the

Contributors xvii

History of Medicine. With particular interests in the medical history of Wales and of patient welfare, he has contributed several historical articles to Medline journals, including Journal of the History of Medicine and Allied Sciences, and he is author of Doctor for the People (Update Books, 1980) and Wreath on the Crown. The Story of Sarah Jacob, the Welsh Fasting Girl (Llandysul: Gomerian Press, 1967). He edited or is co-editor of Wales and Medicine (National Library of Wales, 1980), Childcare through the Centuries (1986), and Russia and Wales (History of Medicine Society of Wales, 1994). In 1986 he was appointed High Sheriff of the County of Dyfed, Wales, a selection made by the Queen, who allegedly pricks the name from a list with her sewing needle. Among his tasks in mis role is the solemn duty to 'Read the Riot Act' in the event of public disturbances. Jacalyn Duffin, MD, PhD, is a hematologist and historian who holds the Hannah Chair at Queen's University in Kingston, Ontario, where she does clinical consulting and teaches in medicine, philosophy, and history. She is the author of Langstaff: A Nineteenth-Century Medical Life (U Toronto P, 1993), To See with a Better Eye: A Biography ofR.T.H. Laennec (Princeton UP, 1999), History of Medicine: A Scandalously Short Introduction (U Toronto P, 1999), and Lovers and Livers: Disease Concepts in History (U Toronto P, 2005). Joel D. Howell, MD, PhD, is the Victor Vaughan Collegiate Professor of the History of Medicine at the University of Michigan, Ann Arbor, MI, where he is a practicing internist and holds appointments in the departments of Internal Medicine (Medical School), History (College of Literature, Science and the Arts), and Health Management and Policy (School of Public Health). He has published on the clinical application and diffusion of technology, in both historical and medical periodicals, including Journal of the American Medical Association (JAMA), New England Journal of Medicine, Academic Medicine, the Bulletin of the History of Medicine, and the Journal of the History of Medicine and Allied Sciences. With a focus on the social and contextual aspects of American and English obsession with technology, his current research examines the factors that have hastened or slowed its diffusion into clinical practice and analyzes their implications for health policy. His most recent book is Technology in the Hospital: Transforming Patient Care in the Early Twentieth Century (Johns Hopkins UP, 1995). He also directs the Robert Wood Johnson Clinical Scholars Program and the Program in Society and Medicine. He enjoys cycling (road riding) and opera.

xviii

Contributors

Margaret Humphreys, MD, PhD, received degrees from Harvard in medicine and history of science. She teaches history at Duke University and has practiced general internal medicine. She is the author of two books on the history of disease in America: Yellow Fever and the South (Rutgers UP, 1992) and Malaria: Poverty, Race, and Public Health in the United States (Johns Hopkins UP, 2001). Currently she is the editor of the Journal of the History of Medicine and Allied Sciences. Richard J. Kahn, MD, practices internal medicine in Rockport, Maine, and is on the clinical faculty of University of Vermont and Dartmouth Medical Schools. His historical writings on American medicine have appeared in the Journal of the History of Medicine, Bulletin of the History of Medicine, American National Biography (Oxford UP, 1999), and the New England Journal of Medicine. Current projects include a paper on Noah Webster's efforts in the field of epidemiology circa 1800 and publication of an annotated transcription of the manuscript Diseases of the District of Maine by Jeremiah Barker (1752-1835). Carla C. Keirns, MD, PhD, completed both doctoral degrees in 2003 and is currently a resident physician in internal medicine at the Hospital of the University of Pennsylvania, in Philadelphia. Her historical work has been published in the Journal of the History of Biology and Studies in History and Philosophy of Biological and Biomedical Sciences. She served as visiting curator (with Robert Aronowitz, MD) to the U.S. National Library of Medicine's exhibition 'Breath of Life: Asthma in Historical Perspective,' which ran from 1999 to 2001 and remains available on-line at the National Library of Medicine website and as a DVD published by the National Heart, Lung and Blood Institute. She is completing a book on the history of asthma in the United States. Barron H. Lerner, MD, PhD, is the Angelica Berrie-Gold Foundation Associate Professor of Medicine and Public Health at Columbia University in New York City. His historical work has appeared in the Washington Post and the New York Times as well as several scholarly journals of medicine or history, including Annals of Internal Medicine, Lancet, New England Journal of Medicine, Bulletin of the History of Medicine, Social Science and Medicine, and Journal of the History of Medicine and Allied Sciences. He is the author of two books: Contagion and Confinement: Controlling Tuberculosis along the Skid Road (Johns Hopkins UP, 1998) and

Contributors

xix

The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in TwentiethCentury America (Oxford UP, 2001). Howard Markel, MD, PhD, is the George E. Wantz Professor of the History of Medicine, professor of pediatrics and communicable diseases, and professor of history at the University of Michigan, where he directs the Center for the History of Medicine. His research in both history and pediatrics has been published in numerous scholarly journals, including Lancet, Pediatrics, Journal of the American Medical Association (JAMA), Academic Medicine, and the Bulletin of the History of Medicine. He is a frequent contributor to the New York Times, Harper's, National Public Radio, the Washington Post, and other lay publications, and is author, co-author, or editor of several medical books, including The H.L. Mencken Baby Book (Hanley and Belfus, 1990), The Practical Pediatrician (Scientific American, 1996), and The Portable Pediatrician (Hanley and Belfus 1992, 2000). His historical book Quarantine!: East European Jewish Immigrants and the New York City Epidemics of 1892 (Johns Hopkins UP, 1997) won the Arthur Visealter Prize of the American Public Health Asssociation. He recently completed When Germs Travel, a book on the history of immigration and public health in modern America published by Pantheon/Alfred A. Knopf in 2004. Robert L. Martensen, MD, PhD, is James Knight Chair of Ethics and Humanities and Professor of Surgery at Tulane University School of Medicine. His recent book, The Brain Takes Shape: An Early History (Oxford, 2004), explores wide-ranging debates about mind and body that took place during the Scientific Revolution and their resonance in the present. Other recent work studies human radiation experiments in the development of nuclear medicine (co-authored with David S. Jones) in Useful Bodies, Jordan Goodman et al., eds (Johns Hopkins UP, 2003) and the history of bioethics (Journal of the History of Medicine and Allied Sciences). Currently he is preparing a book on the history of American emergency rooms. Russell C. Maulitz, MD, PhD, is an internist and professor, practicing within the department of Family, Community, and Preventative Medicine at Drexel University College of Medicine in Philadelphia, PA. Uncommonly computer-literate, he is the founding director of the Institute of Healthcare Informatics, was the founding webmaster of the

xx

Contributors

American Association for the History of Medicine, and is a key player in a dizzyingly brilliant project to digitize the entire Index Catalogue of the Library of the Surgeon General. He is the author of Morbid Appearances: The Anatomy of Pathology in the Early Nineteenth Century (Cambridge UP, 1987) and has edited or co-edited two other books: Unnatural Causes: The Three Leading Killer Diseases in America (Rutgers UP, 1989) and Grand Rounds: One Hundred Years of Internal Medicine (U Pennsylvania P, 1988). With Duffin (above), he translated Mirko D. Grmek, History of AIDS (Princeton UP, 1990). His spare time is devoted to Parisian living, Zydeco dancing, Tuscan cooking, and being a Seeing-Eye Person for a Brittany spaniel. Neither Dr Maulitz nor his mother wrote this profile. Sandra W. Moss, MD, is a retired internist with a special interest in kidney disease. She is a former clinical associate professor of medicine at Robert Wood Johnson Medical School, University of Medicine and Dentistry of New Jersey. Currently, she is working toward a master's degree in history at Rutgers University, where her research focuses on the history of medicine in New Jersey. Her historical articles have appeared in New Jersey Medicine, the Journal of Urology, and ACOG Clinical Review; she has spoken before the American Osier Society on several occasions. For many years, she contributed historical vignettes to Seminars in Dialysis. Anne Marie Moulin, MD, PhD, an internist specializing in parasitology, tropical medicine, and infectious diseases who also holds a doctorate in philosophy, is 'directeur de recherche' at the French CNRS (Centre national de la recherche scientifique). Throughout her career, she has managed to work in both domains simultaneously. She was head of a department within the Institut de recherche pour le developpement dedicated to both biomedicine and the social sciences. In 2002, she moved to Cairo to join the Centre d'etudes demographiques, economiques, et juridiques (CEDEJ). She also chairs the Board of the French Agency for AIDS research (ANRS). Her historical work is on the history of immunology and biomedicine in various cultural contexts, especially as it pertains to the contemporary Arab and Muslim world. She has written or edited a number of books and is the author of many articles in scholarly journals of both medicine and history. Her books include Le dernier langage de la medecine: histoire de I'immunologie de Pasteur au SID A (Presses universitaires de France, 1991) and L'aventure de la vaccination (Fayard, 1996).

Contributors xxi

T. Jock Murray, MD, a neurologist, is a professor and founding Director of the Medical Humanities program at Dalhousie University in Halifax, Nova Scotia. A former dean of that Faculty of Medicine, he also directs its Multiple Sclerosis Research Unit. Among his many prominent service positions are presidencies of the Canadian Society for the History of Medicine and the Canadian Neurological Society, and Chairman Emeritus of the American College of Physicians (ACP). His publications on neurology, medical education, history, and philosophy have appeared in a variety of journals, including New England Journal of Medicine, Nature Genetics, Academic Medicine, Canadian Medical Association Journal, and Journal of the Royal Society of Medicine. With Janet Murray he is the author of Sir Charles Tupper: Fighting Doctor to Father of Confederation (Fitzhenry and Whiteside, 1999). He was co-author, with Edward Huth, of Medicine in Quotations (ACP, 2000) and, with Mark Silverman and Charles Bryan, of The Quotable Osier (ACP, 2003). He is currently completing a book on the history of multiple sclerosis. Sherwin B. Nuland, MD, is a surgeon at Yale University in New Haven, CT. His work has appeared in a wide variety of periodicals including the New England Journal of Medicine, Time magazine, the New York Times, the New York Review of Books, and the Journal of the History of Medicine and Allied Sciences. He is a regular columnist for the American Scholar and a contributing editor for The New Republic, and has authored several books, including Doctors: The Biography of Medicine (Vintage, 1988), the winner of the 1994 National Book Award; How We Die: Reflections on Life's Final Chapter (Knopf; Random House, 1994); The Mysteries Within: A Surgeon Reflects on Medical Myths (Simon & Schuster, 2000); Lost in America (Knopf, 2003); and biographies of Leonardo da Vinci (Penguin Putnam, 2000) and Ignac Semmelweis (Norton, 2003). Steven J. Peitzman, MD, practices and teaches internal medicine, nephrology, and history of medicine at Medical College of Pennsylvania Hospital, in Philadelphia, and at Drexel University College of Medicine, where he is Professor of Medicine. His historical publications in clinical and scholarly journals have centered on nephrology, medical education, and women in medicine; and years ago, he managed to adduce a few clinical articles to his C.V. He is the author of A New and Untried Course: Woman's Medical College and Medical College of Pennsylvania, 1850-1998 (Rutgers UP, 2000). He has also worked with the Clinical Skills Assessment of the Educational Commission for Foreign Medical

xxii Contributors Graduates and serves as a volunteer guide at the Railroad Museum of Pennsylvania. Walton O. Schalick, HI, MD, PhD, is a pediatrician and physiatrist (Physical Medicine & Rehabilitation) who cares for patients both in a Newborn Follow-up Clinic and in the acute and subacute floors at St Louis Children's and Barnes-Jewish Hospitals in St Louis, MO, where he is also Assistant Professor of Pediatrics and Assistant Professor of History at Washington University. The author of numerous historical and medical articles and chapters, he is finishing a book on medieval medicine at the birth of the universities, Marketing Medicine, and in the middle of another on the history of children with disabilities in nineteenth-century Europe and America. He is an Associate Editor on The Encyclopedia of Disability (Sage Press) and has received a myriad of grants and awards for scholarship and teaching in pediatrics and history. An erstwhile fencer, he has returned to rowing and continues his practice as a, for now, amateur magician. Max Shein, MD, is a practicing pediatrician, affiliated with the Universidad Nacional Autonoma de Mexico in Mexico City, a member of the Mexican Academy of Pediatrics, and an Emeritus Fellow of the American Academy of Pediatrics. He was visiting professor at the University of Tel Aviv in 1979-80. In 1995, he received the Award of Excellence in Medicine of the American-British Cowdray Medical Center of Mexico. A noted collector of pre-Columbian art and musical instruments, he is a past-president (1993) of the Sociedad Mexicana de Historia y Filosofia de la Medicina. He has published more than one hundred papers in both medicine and medical history in Mexico and abroad, and is the author of El nino precolombino (1986), which was translated by Marina Castaneda as The Precolumbian Child (Culver City, CA: Labyrinthos, 1992). Currently he edits the History and Philosophy of Medicine section of the Journal of the American British Cowdray Medical Center and serves on the editorial board of the Boletin Mexicano de Historia y Filosofia de la Medicina.

Clio in the Clinic

This page intentionally left blank

Clio in the Clinic: An Introduction JACALYN DUFFIN

Medical history is familiar, but what is historical medicine? It is the kind of practice that emerges when Clio, the muse of history (figure 1), joins medical doctors in their work. The authors in this volume - each an accomplished historian as well as a practicing physician - tell tales from their medical lives about Clio's contributions to the clinic. Clinician-historians are not new - far from it. One of the Hippocratic treatises of the fifth century BC is called On Ancient Medicine. Nor is medical autobiography new. It is an old and popular genre with many distinguished contributors from the second-century Greek physician Galen to the contemporary neurologist Oliver Sacks. So, what is new here? In this book, historically sensitive practitioners write in the first person on how history intersects with and occasionally improves their work as doctors. Historians are wary of claims to priority, and numerous authors have already waxed eloquent about history's usefulness to medical training. Nevertheless, I venture to suggest that this volume may be the first collection of medical autobiography to contribute to that old idea of utility by focusing on history as a practice tool. The History of Clinician's History As recently as 1800, some doctors still read and taught the ancients not only for their historical value, but also for medical solutions to actual clinical dilemmas (e.g., Aubry, 1810; Barker, 1747; Cope, 1786). In other words, historical figures functioned as fellow consultants; their venerable writings were accessible to many doctors because they were relevant to practice. Greek and Latin were prerequisites for medical study.

4 Jacalyn Duffin

1 Clio with her scroll, Charles Meynier (French, 1768-1832), Cleveland Museum of Art.

Clio in the Clinic: An Introduction 5 During the nineteenth century, however, clinical applications of medical history waned. Older medical treatises no longer seemed to be useful. They could not be mapped easily onto the newer diagnoses, methods, and treatments. Disease paradigms had shifted to the anatomical and physiological explanations that we favor today; and these ideas were anchored to seemingly unprecedented technologies - vaccinations, microscopes, stethoscopes, anesthetics, antiseptics, ophthalmoscopes, endoscopes, surgery, and X-rays. Rightly or wrongly, 'practical' wisdom from the past all but vanished into the nether realm of classics, curiosities, and after-dinner speeches. For most of the last two centuries, then, the history of medicine was maintained by erudites, some of whom had been clinically trained: Kurt Sprengel, Emile Littre, Charles Daremberg, Fielding Garrison, Charles Singer, Henry Sigerist, George Rosen, Georges Canguilhem, Erwin Ackerknecht, Lester King, Worth Estes, Mirko Grmek, Saul Jarcho, and Owsei Temkin. Authors of a vast array of scholarly works, ranging from philology to radical social criticism, these physician-historians wrote mostly of the past. On the rare occasions when they addressed the present, they did so as philosophers and critics. But they did not describe their own clinical activities. Indeed, many of them never practiced medicine at all. In the last three decades, professional historians (those with PhDs) rethought medical history as social and cultural history; they reshaped, revitalized, and now dominate the discipline. Despite these demographic changes in the field, clinician-historians have not disappeared. Some continue to research and write with the professionals. Others have withdrawn to the safe havens of volunteer teaching within their own institutions, or they meet with other doctors who share their interests in local, national, and international organizations, or within specialist bodies, or the American Osier Society, or the breakfast 'support group' within the American Association for the History of Medicine. But at those meetings, they talk of medical history, not medical practice. I have long enjoyed membership in several of these groups; through them, I found the authors assembled here. How This Book Happened In the autumn of 2001, I was on sabbatical in the south of France, hopelessly blocked on the book that I was supposed to be writing. Any distraction was sufficient to deflect me from the main task, and in that

6 Jacalyn Duffin

part of the world, diversions are far too easy to find. One pleasant distraction was a request from Frank Huisman and John Harley Warner for an essay about medical history as it is done by clinicians. That assignment led to the present volume. For the invited essay, I reviewed the history of clinician history, described above, by generating a long list of clinician-historians covering several generations. I concluded that the 'genre' of clinician history did not really exist separate from the rest of medical history, except as a 'straw man/ a bogus community, a Vonnegutian 'granfaloon/ a construct of would-be detractors who marshal it in service of a useless turf war over who should be writing history. Much too frequently, clinician history has been reduced to, and equated with, bad history. I argued that good history written by doctors was as rich and diverse as the entire field; bad history was just plain bad (Duffin, 2004). One November evening, I was mulling over this matter of so-called clinician history while hiking on the hill behind my 'gite/ If the history done by physicians was divergent, would not the same variability apply to the medicine done by historians? How exactly, I wondered, does my being a historian affect my clinical practice? And would it be the same for my colleagues? A glorious panorama of mountains unfolded to the south and east, and Provence's famous dry terrain, covered in thyme, sage, and rosemary, made little aromatic puffs with every step I took. Perhaps because of the fragrance, so reminiscent of incense, I was suddenly struck with the memory of my blue nun who came under my care because of her religion and her blood problems. Our encounter had been within the confines of my specialty of hematology, but I had always considered the resolution of her case as a product of history. Did my history colleagues who also happen to be doctors have similar experiences? How often did they use Clio in the clinic? Did she go there with them at all? Fired up by these questions, I dashed off an email to a handful of friends, kind enough, I thought, not to laugh too much if the idea seemed silly (figure 2). To my surprise and delight, most responded within the week, sending an enthusiastic 'yes' to all three questions. Only two said 'no' to question #3, pleading overwork but praising the idea. Many supplied names of others who might like to contribute, until our team expanded, rather organically, into the group assembled here. While waiting for January 2002,1 had no idea what the stories would be like. Mystery added to the anticipation. Perhaps no common themes

Clio in the Clinic: An Introduction 7 Subject: Idea 20 November 2001 In my work as a hematologist I have from time to time run across a case that draws on my experience as a historian of medicine - either in making the diagnosis, or in providing some other insight that might have escaped someone who was not an historian as well as a physician. I doubt that my experiences are unique, but I really have no idea how many of us who do both history and medicine have had similar moments when medicine and history intersect. I'd be grateful for your answers to the following questions: 1. Have you ever had a medical case or other experience that drew on your expertise as an historian? YES or NO 2. Would you be interested in contributing to a volume of autobiographical essays about such cases? YES or NO If NO to #2, thanks for the reply. 3. If YES to #2, would you be willing to provide a short abstract (e.g., 100250 words) by 31 January 2002? YES or NO With thanks and best wishes, Jackie

2 E-mail message

or patterns would be found; possibly none of these overworked individuals would deliver the promised paper. Yet they did. As the essays rolled in, I had a voyeuristically wonderful time peeking into the private lives of medics whom I had long known only as historians. Historian's Medicine: What This Volume Is and What It Is Not This volume does not participate in the otiose debate over who should do medical history, or who does it best: clinicians or historians. Indeed, some of the authors also hold credentials as professional historians or philosophers. Many of us believe that history makes us better doctors,

8 Jacalyn Duffin but we do not claim that clinicians possess special abilities for the doing of medical history. Rather, our stories are more about medical practice than they are about history. They relate to the numerous earlier descriptions of the usefulness of history to medicine written over the last fifty years (Beatty, 1990; Blake, 1968; Bylebyl, 1982; Galdston, 1957; Howell, 1995; Lerner, 2000; Loewy, 1985; Price, 1995; Prioreschi, P. 1991, 1992; Risse, 1975; Rosen, 1948; Shortt, 1982; Smith, 1996; Temkin, 1968). In a few countries, such as England and Germany, the potential merits of history have proved so convincing that national bodies now recommend the formal (re-)inclusion of history in medical education and research (Biddiss, 1997; Horton, 1997; Jackson, 1996; Labisch, 2004; Meinel, 2001; Price, 1995). Our essays constitute new evidence for that old utility argument by opening an intimate window on how history informs and serves clinical practice. They describe what life is like for us 'docs' when we leave the history meetings and go back to the wards. We may not treat our distant predecessors with the collegial fellow-feeling that they enjoyed two hundred years ago; and we readily admit that, sometimes, medicine has done grievous harm. But in using our historical skills of investigation and analysis, we welcome Clio, in the guise of method or reasoning, to play an active role in the clinic. The contributors to this volume hail from five countries and represent sixty years of training; the most senior completed medical school in 1943, the youngest in 2003. They include several internists, four pediatricians, two psychiatrists, two infectious-disease specialists, one neurologist, one emergentologist, and one surgeon. How did we become historians? That journey differs greatly for each of us, as the stories will describe. Only a few received historical instruction in medical school. Some studied history early in life, turning to medicine later; others found Clio by trying to solve problems arising in the confusion of active practice. Our history mentors include some of the names above - Estes, King, Grmek, Jarcho, Temkin - and many clinicians whom we met on the wards. The wide-ranging diversity of the essays was unexpected, and finding a structure for this collection was difficult. The section heads organize the contributions and feature some of the common themes, but the fit is not perfect. Some stories could easily belong to another grouping, and many other ideas, which were not used as section heads, run throughout the work, as I will now explain.

Clio in the Clinic: An Introduction 9

It was for diagnosis, especially, that I had felt the hand of Clio in the case of the blue nun. That was what I expected my colleagues would find too. Indeed, the experiences of Baker, Cule, Humphreys, Lerner, Keirns, Markel, Martensen, Moss, Moulin, Murray, Schalick, and Shein show how history helped to make useful diagnoses. For them, historical assistance came from any era, from antiquity, through the Middle Ages, to modern times. Some of our historic consultants are venerable. Reading Hippocrates proved worthwhile for Cule, Martensen, and Moulin. William Osier appears, of course, along with a number of more recent figures, some quite obscure. In several situations, the history-generated diagnosis did not arrive in time to save a life; its utility was in explanation if not preservation. Many essays in the book display love, even passion, for consulting history. Exemplifying that enthusiasm, Nuland fell in love with a timeless Clio through a diagnosis. Diagnostic possibilities are amplified by historical knowledge. For example, Baker, Keirns, Moss, and Moulin use their encounters with ostensibly 'defunct' conditions to suggest that medicine may have been too hasty in discarding certain diagnostic categories from the past. Built on the accurate observations of our intelligent predecessors, these ideas were tossed out, like the proverbial baby, with the bathwater of antiquated technology and nomenclature. The old wisdom contained valid answers to reasonable questions which we no longer ask, although perhaps we should. Two writers, Braslow and Markel, use 'autopathography' when they describe 'illness' in family members; they both remind us that the resolution of one disease can unmask, or cause, another. In terms of treatment, deciding on the correct diagnosis often points to the right therapy. But even with a good diagnosis already in hand, Howell, Kahn, and Martensen used Clio's help to extend lives that would have been shortened dramatically without her. These practical applications of history in diagnosis and treatment are of a pragmatic 'problem-solving' variety. That is what my own experience had been. But many of the writers emphasized a more ephemeral aspect of Clio's utility that I had not anticipated. Borrowing a word from both Crenner and Braslow, I will call it 'timelessness.' Many people assume that history must provide students with a sense of belonging to a long and glorious tradition. Postmodern historians are naturally skeptical of such grandiose positivism. I recall my own discomfort at being told by an eager colleague that my main task as the historian of a medical school would be to cheer up the students and

10 Jacalyn Duffin instill pride in professional identity. I should, he advised, describe only the many brilliant achievements in medicine's past and 'leave out all the bad stuff/ This self-congratulatory, celebratory 'timelessness' is not what is to be found here. In these essays, timelessness is about the fellow-feeling of multigenerational connectedness. The contributors do indeed derive inspiration, confidence, and consolation from medical history. To my surprise, however, the historical examples that offered the greatest comfort were not those of brilliant discoveries, therapeutic triumphs, and paradigm shifts; rather they were the 'bad stuff: tales of fear, error, disaster, and loss. Our timelessness refers to the historical concept of longue duree. Used by both Crenner and Schalick, this term was coined by the Annales school to express the extension of customs or occurrences well beyond the common boundaries of politics or time, as measured in artificial units of decades or centuries (e.g., Braudel, 1980); it is particularly evident in the phenomena of everyday life, such as the pain of being sick. Doctors have always witnessed and validated suffering, frustration, and death. While hoping that our patients will recover, we also deal with people who are about to die, knowing that everyone must face death sometime, ourselves included. In this context, medicine seems to have failed. But history teaches physicians that they have a worthy task here too. Thus, Crenner found a link to centuries of medical life as he watched a daughter struggle with her comatose mother's certain but lengthy demise. Bryan drew courage and strength to face an inexorable epidemic from the story of a young doctor who had expired fifty years earlier while trying (and failing) to stem the ravages of another infectious disease. Among its timeless virtues, history provides a strong antidote to the arrogance that tracks medical life like an occupational hazard. Doctors forget that so few ideas are really new. In this vein, Baker, Braslow, Humphreys, Lerner, Markel, Nuland, Peitzman, and Schalick tell tales on themselves (and on others), in which Clio taught humility with vivid flair. And then there is the timelessness of doubt. I was amused to read in so many of these essays some variation of the sentence 'Who knew?' realizing only later that I had also used it myself. Berman, especially, and several others (Belkin, Braslow, Lerner, Martensen, and Schalick) embrace the power of what they explicitly describe as a Heisenbergian uncertainty. Vexed at first by clinical doubt, now they grasp it and

Clio in the Clinic: An Introduction 11

employ it like a handy medical device. The two psychiatrists, Belkin and Braslow, and the nephrologist, Peitzman, found that recognizing the historical contingency in their differing practices and 'subverting the illusion of certainty' (Braslow) was 'orientating not disorienting' (Belkin). It brought comprehension and even acceptance of circumstances, practices, and ideas that had once seemed dubious. Together with Berman, Maulitz, and Schalick, they believe that knowing how uncertainty hung over parallel situations in the past provokes and deepens our understanding of (and ability to cope with, if not solve) the dilemmas, conundrums, and apparent absurdities of the present. Ethics appears in at least five papers (Berman, Belkin, Braslow, Crenner, and Moulin). These clinicians fret over the 'right' course of action when Clio complicates decision-making by forcing us to reconsider our present-day assumptions. With her dedication to justification and contextualization, Clio insists on explanation, and that, inevitably, leans toward exoneration. Can we be confident that what seems 'right' now will remain 'right' in the future? Clio thereby casts doubt upon modern bioethics, which our historian selves are inclined to distrust as a rival and much-vaunted fad for imposing moral judgments. Could bioethics be the latest form of social control? We hope not. Yet more themes enter into this mix. Six contributors (Braslow, Cule, Martensen, Nuland, and Peitzman) recall the impact of history on their early careers. Several more (Bryan, Humphreys, Markel) look back on the medical changes during their lives, citing their own experience as a historical source. Two (Murray and Schalick) describe the exercise of history in the academic setting - the 'history consult' or the 'retrospective diagnosis' - to contemplate and question present-day habits of practice and publishing. A few (Baker, Braslow, Howell, Humphreys, Peitzman) describe history in their teaching relationships with students and house staff. Recurrence of words and ideas in the essays reveals Clio's impact on medical diction and thought, but a predisposed personality for choosing historical medicine also seems a good explanation for similarly recurring threads. For example, history's ability to clarify 'opacity' appears more than once. Several contributors prefer the dusty stacks of libraries to the speed and glitz of the Internet. Is it merely coincidence that six clinical vignettes turn on the frightening (and ancient) example of overwhelming pneumonia in the form of the 'white-out lung'? Lerner and Maulitz perceive limits to the usefulness of history. They envisage pitfalls in transferring the methods of one discipline to an-

12 Jacalyn Duffin

other; and they caution that a desire to seek influences will inevitably produce them. Being trained in two disciplines, they remind us, can create even greater internal conflicts over the 'right' course of action. Most of these writers consider history to have made them better doctors, and not only in its ability to inspire the moral virtues of humility, courage, and honesty. History elevates clinical acumen. Bryan hesitates to make that claim, because he knows many effective physicians have no interest in history at all; he does admit that it has helped him personally and enriched his life and work. Two additional contributions of Clio to the improvement of medical practice seem to pervade these essays: for lack of better terms, I will call them 'travel' (with thanks to Baker) and 'thinking.' In terms of 'travel,' historians are well accustomed to crossing tremendous distances of time and space. Immersed in her research, a historian virtually enters another world, taking stock of its ecological, social, cultural, and political interactions, even as she may prefer to concentrate on its science and technology. Centuries and continents are traversed in a single afternoon. This capacity to step in and out of past cultures may facilitate travel across other boundaries that are situated entirely within our own time - boundaries of nationality, language, literacy, age, gender, race, class, religion, culture, sexual orientation, and locality, be it urban or rural. I was startled, but should not have been, to realize how many clinical examples that had been selected to demonstrate the value of history in medicine (including my own) were stories of patients who had impelled us to move, emotionally and intellectually, beyond the confines of our ethnocentric and mechanistic expectations. Finally, in terms of 'thinking/ historical reasoning sharpens our ability to reason medically - just as learning a second language enhances facility with the first. Having long held this view, I was excited to find so many of my colleagues expressing it too: Baker, Belkin, Braslow, Howell, Humphreys, Lerner, Markel, Martensen, and Schalick. Every clinician - even the one who professes to despise history - must be a historian of her own patients; every patient, a historian of himself. And the analogy goes much deeper. What good historians do - careful collection of evidence, followed by its interpretation and contextualization within a dominant theoretical framework supported by other historians - is the very mirror of medicine (as Schalick writes, 'speculum medicinae'). What good doctors do is a careful reading of the evidence provided by observation of the patient's history, examination,

Clio in the Clinic: An Introduction 13

and investigations, followed by its interpretation into the signs that point to the 'right' diagnosis, prognosis, or therapy, which reside in the dominant epistemic categories of their time. This elegant process - an intellectual dance - demands constant attention and erudition because of the fragility and contingency of those epistemic categories - the diseases and their treatments. Historians use skepticism like a scalpel. They may not believe that truth resides in the past, but they accept the obligation to search for it there. Historically sensitive doctors use doubt too, but the imperative responsibility to alleviate the suffering of their patients obliges them to accept and wield the contingent 'truths' of the present, because it is here and now that they must attempt to help and hopefully do no harm. BIBLIOGRAPHY Aubry, Jean Francois. 1810. Oracles de Cos. Montpellier: J.G. Tournel. Barker, John. 1747. An Essay on the Agreement betwixt Ancient and Modern Physicians. London: Hawkins. Beatty, William K. 1990. Why study medical history? Journal of the American Medical Association (JAMA), 264: 2816, 2820. Biddiss, Michael. 1997. Tomorrow's doctors and the study of the past. Lancet, 349: 874-6. Blake, John B. (ed.). 1968. Education in the History of Medicine: Report of a Macy Conference. New York and London: Hafner. Braudel, Fernand. 1980. On History, Sara Mathews (tr.). Chicago: University of Chicago Press. Bylebyl, Jerome J. (ed.). 1982. Teaching the History of Medicine at a Medical Center. Baltimore and London: Johns Hopkins University Press. Cope, Henry. 1786. Demonstratio medico-practica prognosticorum Hippocratis. Venetiis. Duffin, Jacalyn. 2004. A Hippocratic triangle: history, clinician-historians, and future doctors. In Frank Huisman and John Harley Warner (eds.), Locating Medical History: The Stories and Their Meaning. Johns Hopkins University Press, 432-49. Galdston, lago (ed.). 1957. On the Utility of Medical History. New York: International Universities Press, Inc. Horton, Richard. 1997. A manifesto for reading medicine. Lancet, 349: 872-4. Howell, Joel D. 1995. Histories of academic medical education. Academic Medicine, 70: 692-5. Jackson, Mark. 1996. The use of historical study in medical research. Family Practice, 13: S17-S21.

14 Jacalyn Duffin Labisch, Alfons. 2004. Transcending the two cultures in biomedicine: The history of medicine and history in medicine. In Frank Huisman and John Harley Warner (eds.), Locating Medical History: The Stories and Their Meaning. Johns Hopkins University Press, 410-31. Lerner, Barren H. 2000. From Laennec to lobotomy: teaching medical history at academic medical centers. American Journal of the Medical Sciences, 319: 279-84. Loewy, E.H. 1985. Teaching the history of medicine to medical students. Journal of Medical Education, 60: 692-5. Meinel, Christoph. 2001. Geschichte der Naturwissenschaft. der Technik, und der Medizin in Deutschland, 1997-2000. History of Science, Technology, and Medicine in Germany, 1997-2000. Weinheim: Wiley VCH [bilingual revised extract from Berichte zur Wissenschaftsgeschichte, 23: 287-302]. Price, Robin. 1995. The TAO of medical history: or, why do it? Journal of the Royal Society of Medicine, 88: 280P-283P. Prioreschi, P. 1991. Does history of medicine teach useful lessons? Perspectives in Biology and Medicine, 35: 97-104. - 1992. Physicians, historians, and the history of medicine. Medical Hypotheses, 38: 97-101. Risse, Guenter B. 1975. The role of medical history in the education of the humanist physician. Journal of Medical Education, 50: 458-65. Rosen, George. 1948. The place of history in medical education. Bulletin of the History of Medicine, 22: 594-627. Shortt, S.E.D. 1982. History in the medical curriculum: a clinical perspective. Journal of the American Medical Association, 248: 79-81. Smith, Michael. 1996. Medical students and the history of medicine: shall the twain meet? Journal of the Royal Society of Medicine, 89: 530. Temkin, O. 1968. Who should teach the history of medicine? In J.B. Blake (ed.), Education in the History of Medicine. New York and London: Hafner, 53-60. Vonnegut, Kurt. 1963. Cat's Cradle. New York: Delacorte Press/Seymour Lawrence. 'A "granfaloon" is a false karass, like 'the communist Party, the Daughters of the American Revolution, the General Electric company ... and any nation, anytime, anywhere' (67).

Clio in the Clinic: An Introduction 15

3 Clio with her scroll, or is that a prescription that she is holding? W. Binder, Dr Vollmer's Worterbuch der Mythologie Aller Volker, 3rd ed. Stuttgart: Hoffmann'sche Verlagsbuchhandlung.

This page intentionally left blank

Consulting the Past

This page intentionally left blank

The Night I Fell in Love with Clio SHERWIN B. NULAND

I am an unreconstructed, old-fashioned historian-manque, by which I mean that I see the saga of medicine with the eyes of an autodidact amateur, a clinician whose heritage can be understood best as a smoothly connected series of fascinating stories about doctors. Let me retract that word 'autodidact.' It is far too lofty for what I have been doing over these past four decades. Not only that, but it implies that the self-teaching has reached a level of completion that makes it the equivalent of the formalized education that might have been attained had I studied the subject systematically, as in university courses leading to a degree. What I have done, on the other hand, is a little like learning to play the piano by ear. Like Irving Berlin, who famously did the same, I can write a tuneful song that the public enjoys, but a symphony or any real contribution to scholarship is beyond the range of my capabilities. If I am to be included among the ranks of the historians, it is only as an incomplete one. People like me are out of fashion. Though we were at an earlier period the mainstays of the historical community, time and the development of the field have passed us by. Worse yet, we are 'whiggish,' a catch-all word used by some of the more smug professionals to castigate those of us who persist in our conviction that - regardless of its frequent misadventures - medicine has a glorious history of gradually ascending achievement. I stand with the prototype of all of us, William Osier, in believing that among the greatest values of studying the past is to benefit from what he called 'the silent influence of character on character' ([1901], 38). Some of those legendary characters of ours have been contentious, obnoxious, and arrogant - think of Galen, Vesalius, or Paracelsus.

20 Sherwin B. Nuland

Others have been sweet-tempered, equanimous, and devoted to humankind more than to themselves - think of Morgagni, Lister, and Osier himself. It hardly makes a difference; there is much to learn from all of them, whether indeed about character or about the ingredient in their lives that Sir William called 'the master-word in medicine/ Work. Each of them was an assiduous worker, and in this there is a lesson. Clinicians have always known a great deal about the value of unremitting hard work, and that factor alone makes the lives of so many predecessors understandable, and even the stuff of empathy, another quality with which bedside doctors are familiar. I belong to a group that of late has been dubbed - as though knighted by the royalty and nobility who are the current leaders of our field of interest - 'clinician-historians/ which is another way of saying that we ride in the side-car of the motorcycle driven by the real scholars. Of course, some of our betters occasionally ride there with us, their PhDs hidden for an hour under their medical diplomas as they join us at a yearly breakfast during the annual meetings of the American Association for the History of Medicine. But when the last croissant or bagel has been chewed and washed down with hotel coffee, they return to their rightful level in the hierarchy of scholarship where so few of us have a place. And that is how it should be. We spend most of our time caring for the sick; they spend most of their time studying the evolution and trajectory of what we do. The two groups of 'clinician-historians' belong together as much as we belong apart. But neither of us should masquerade as the other. They are the real contributors to the advance of historical knowledge; we are the physicians whose lives are enriched by the work of our academic colleagues. I have done most of my self-learning of history in a single room and its stacks, which house the historical collections of Yale's Gushing/ Whitney Medical Library. It is no exaggeration to say that I have spent thousands of hours in that place, communing with the past of my calling. I take seriously the words of the minister who delivered the invocation at the library's opening in 1948, 'Here, silent, speak the great of other years' (Stimson). They speak, and I can hear it. I have let the influence of those great flow over me and into me. I may not be a better doctor for it, but I am certainly more understanding than I might otherwise have been. And perhaps most importantly, it has been great fun. And now the confession. For all the foregoing fine words, my interest in the history of medicine grows out of the same wellspring as my

The Night I Fell in Love with Clio 21

fascination with surgery: no matter the high-toned declarations of intellectual, technological, or humanistic devotions to our art, what motivates the vast majority of surgeons and historians alike, I am convinced, is that they are having great fun, whether in the operating room, the clinic, or the library. Were it otherwise, we would drown in the total immersion that each discipline demands in order to make sense of it. Like every other doctor at that time, I had my first contacts with the history of medicine when I was a first-year student - at the Yale School of Medicine - and it is hard to recall just how bored the whole thing made me. The small amount of teaching was done by a few tightly academic historians, who managed to make their subject as tedious as the anatomy I struggled with in the dissecting room. The real problem, though, was not so much their monochromatic approach to lectures as it was the subject matter itself: it seemed to have nothing at all to do with my purpose in studying medicine. I could just as well stop coming to the lectures, and I soon did. My conversion into an acolyte at the shrine of medical history began only when I had graduated from medical school and found myself in a surgical residency program where several of the faculty were committed to the earnest, though not deliberate, evangelizing of their trainees. These were the men after whom I was modeling my career, and they cared deeply about forebears and traditions. Their colorful anecdotes on rounds and in the operating room conjured up living scenes of the past and brought to immediacy the difficulties faced by surgeons of bygone times. In their telling of it, the men of earlier eras revealed themselves to be not much different than we were, filled with uncertainties about how to proceed and inventing strategies to overcome the obstacles of always-inadequate knowledge and an ever-increasing range of challenges. In the stories of my teachers, eponyms became living men and centuries-old problems arose again, in the context in which they had originally appeared. I was enthused to find out how Sir Astley Cooper had first identified his ligaments and why John Hunter thought his canal to be so crucial in the surgical treatment of aneurysms; in time I could not look at an adrenal gland without thinking of Thomas Addison or a pituitary without Harvey Gushing. As for William Halsted - well, in his case, the associations went on and on, and in time came to include the discovery of the local anesthetic effects of cocaine and the beginnings of the Johns Hopkins Hospital. In the grip of my professors' obvious fascination with the stories they told, I began to slip into a state of mind in which the history of medicine seemed like a natural part of

22 Sherwin B. Nuland

learning how to be surgeon. It was no longer an abstruse and useless discipline dryly taught by men with whom I could not identify. In fact, it was no longer a discipline at all. By the middle years of my residency, it had become a constant accompaniment of my maturation in surgery, as familiar as a Kocher clamp. And as for Theodor Kocher himself, what a story that had come to be! Every once in a while, something palpable happened, when I felt as though I were living on a long-forgotten day in the presence of one of the surgeons I had come to know through the tales I was hearing or from the small amount of reading allowed by the constraints of a 120hour working week. The year before becoming chief resident, I took a six-month clinical fellowship at Guy's Hospital in London, on the cardiac service of Lord Russell Brock, who had pioneered the mitral valvulotomy and several other of the first operations on the heart. Among his other accomplishments, Brock had somehow found the time to write a biography of Cooper, he of the ligament and of the early nineteenthcentury Guy's. One day, our firm - as the British call a unit under the direction of a single consulting surgeon or physician - found itself deprived of our usual meeting room, which had been commandeered by error for another purpose. Brock's junior associate, Donald Ross, suggested that we repair to a small, cluttered room under the eaves of the building's garret, which he had long ago discovered while exploring the hospital. There being only a few ancient and unsteady chairs in the room, I and another of the small group perched ourselves uncomfortably on the edge of a heavy table, one of whose ends was shaped like a thick wooden scroll. As we were leaving the room at the conclusion of our conference, Ross smiled at me and said, 'You might like to know, Nuland, that your arse has been resting for the past hour on Astley Cooper's operating table. That's not the kind of thing you can easily do on your side of the pond.' The thrill of that moment was never surpassed, not even many years later when I first held a copy of William Harvey's De Motu Cordis in my hands. And so, I turned right around and sat myself down again, to the great amusement of the others. My British colleagues, being accustomed to finding themselves in the midst of historical treasures, had long become blase about such things. But no matter my burgeoning interest in medical history - it never occurred to me that I might ever develop a passionate absorption with it. And then all at once, I experienced a transformative moment that I can only describe by invoking the much-overused word 'epiphany.' It

The Night I Fell in Love with Clio 23

was akin to having gone out with a girl on a series of enjoyable dates and then one evening under a full moon and a star-filled sky, suddenly falling in love with her. This is how it happened: It was about 9:00 p.m. on a Friday in the spring of the year when I was chief resident on the thoracic surgical service of Professor Gustaf Elmer Lindskog at the Yale-New Haven Hospital. We always called him G.E.L. in his absence, as though to utter his entire, ineffable name would bring destruction raining down on our heads. He was one of the leaders of American thoracic surgery, the author of a great textbook and deeply respected among his peers. We were in awe of him, and more than just a bit intimidated. The medical resident had asked me to see a previously healthy nineteen-year-old boy who had been admitted to one of the medical wards two days earlier with a high fever and a pleural effusion of no obvious cause. Though the young man's right chest was completely clear of pathology, the left side presented a picture that the radiologist called 'a complete white-out/ meaning that the entire cavity was filled with some sort of fluid that was most likely infected. Multiple attempts to aspirate it had been unsuccessful, and in the usual way of medical house officers, the setting of the sun on a Friday evening had touched off all sorts of alarms about entering a weekend without any improvement in the patient's condition, or even a diagnosis. And so, after two full days of what I grumblingly called 'diddling around/ the surgical consultation was requested, which by my lights should have happened within hours of admission. When my own attempts at aspiration failed as completely as had my internist colleagues', I decided to take the young man to the operating room in order to remove a short segment of rib and insert a large thoracotomy tube for drainage. The procedure was to be done under local anesthesia with some modest sedation given by an anesthesiologist. The whole thing seemed simple enough and promised to relieve the patient's immediate symptoms while providing plenty of material for culture and other laboratory studies. With the young man lying semi-awake on his back, I infiltrated the tissues of the lateral chest wall with a local anesthetic and made a twoinch incision down to the underlying rib. I carefully freed the rib from its envelope of periosteum and cut out a piece of the bone just large enough for a tube whose inner diameter was twelve millimeters. At this point, the only thing separating me from the inside of the chest was the fibrous inner lining of the rib and the one-cell thick lining of the thoracic

24 Sherwin B. Nuland

wall. Though expecting a gush of turbid fluid when the thin layer was incised, my assistant and I were totally unprepared to have our gowns and shoes splattered with brown liquid that instantly filled the operating room with the unmistakable stench of feces. Not only that, but small, feculent flecks could be seen on the liquid-soaked drapes. Before I could jam the wide-bore tube into the opening I had made, a few pieces of formed stool popped through it, each less than a centimeter in size. I was staggered and nonplussed. Only a passage between the large intestine and the chest cavity could explain what I was staring at with such incredulity. But how could such a thing come to be, in a seemingly healthy young man with no previous hospitalizations? Obviously, some major pathology was hiding here, and it would have to be identified immediately. The danger of infection was great. I asked the anesthesiologist to put the patient to sleep, turned him on his side, and opened the chest widely, in a formal thoracotomy. It was only then that the entire problem became clear. The boy had a small hole in his diaphragm, perhaps the size of my little finger, through which one edge of his colon had insinuated itself and become pinched off from its blood supply - the kind of thing that happens in a hernia, much lower down. As the strangulated tissue became gangrenous and died, an opening was thereby created that allowed the bowel contents to flow directly into the chest. The hospital's record room would later find that the same patient had made an emergency visit four years earlier, for what was thought to be a superficial knife wound in the skin of the left upper abdomen. Clearly, the weapon had penetrated deeper than thought deeply enough, in fact, to pierce the diaphragm. Upon healing, it had left only the small, slitlike hole, lying in wait until it could cause trouble. The unexpected operative finding would require some major surgery within both the chest and abdomen, to repair the small diaphragmatic hernia, excise the involved portion of bowel, and construct a temporary colostomy that would be needed until all the infection had cleared. It proved to be a lot of high-intensity operating, and it was about two in the morning when my assistants and I wearily rolled our patient into the recovery room. But as late as it was, we were elated, I most of all. We had discovered a pathology that none of us had ever heard of, done what was required, and saved a young man's life. It was a good night's work. In fact, it was a great night's work, the sort that makes all the exhaustion and stress of a busy residency worthwhile. The only thing better than the case itself was that I could crow about it to G.E.L. as soon as I saw him.

The Night I Fell in Love with Clio 25

I did not have to wait long. Surgical Grand Rounds were held at 8:00 a.m. on Saturday, and there were only a few hours more before the glorious moment when I could tell the department chairman the details of my unique case. I could barely sleep for going over the details again and again in my excited mind. At a quarter to eight, I met the chief in the corridor just outside his office as I always did just before the weekly meeting. The words tumbled over themselves and off my tongue as I described every detail of the unheard-of circumstances and my presumed resourcefulness in finding an immediate solution to them. G.E.L. was a man of prodigious learning and profound Swedish reticence. He engaged in no small talk; when he spoke, it was as though an oracle had delivered a pronouncement not to be questioned or ignored. And indeed, there was rarely need to question, because he knew so much and his judgment had shown itself again and again to be impeccable. As I related the story, not even the density of his remarkably bushy eyebrows could hide the fact that he was not so much impressed as amused at what I was telling him and the way it was babbling out of my mouth. I became less voluble as I came closer to the end of my story, knowing that the spoken part of his response, when it finally came, would let some of the air out of my high-flying balloon. G.E.L. waited for a moment after I had finished, and then - rocking himself back and forth on his heels and swinging his dangling stethoscope as was his wont when making pronouncements on ward rounds he spoke. I have never forgotten his exact words. 'I suppose you think you're the first surgeon who's ever seen such a thing,' he said quietly. I stammered something long since lost in the quagmire that became my mind at that instant. He smiled a small but twinkly eyed smile and said, 'Come with me.' We were standing very near to his office and I followed him into it. He reached up to one of his crowded bookshelves and took down an old leather-bound tome whose pages crackled and shed small browned bits from their edges as he turned them. At last he stopped and asked me, 'How's your French?' 'Not too bad/ I foolishly replied, not realizing that the French in such an old book might be beyond me. And it was, so he had to read and translate most of it for me. The volume was the first edition of the Oeuvres complets, written in 1575 by the greatest French surgeon of the period, Ambroise Pare. The page from which Dr Lindskog was reading described the wound of a certain major who sustained a harquebus shot in the lower left chest at the siege of Turin. After a week of unrelieved suffering, he died and was autopsied. The shot had made a hole in his diaphragm, into which the

26 Sherwin B. Nuland

colon then intruded itself, finally becoming gangrenous and strangulating, allowing liquid stool to pour into his chest. Not only was the clinical picture precisely that of my young patient, but even the opening in the diaphragm was recognizable to me. The few words that described it were French that I could understand. The hole was, wrote Pare, 'comme un petit doigt/ like the small finger of the hand. This was my case exactly. Until that moment, and notwithstanding my growing interest in medical history, I had never previously found it to have any connection with my clinical work. And I had never figuratively (and perhaps literally too) gulped in astonishment at anything I had heard or read of the past of my profession. Though it may sound sappy - and it does, a bit, even to me these forty years later - I was profoundly affected by that experience in G.E.L/s office. I had taken the next step. Medical history was no longer merely a pleasurable accompaniment to surgery; it was intertwined inextricably within it, and within me. And that is how it has been, for all these decades. BIBLIOGRAPHY Osier, William. [1901] 1951. Books and Men. In Selected Writings of Sir William Osier. London and Toronto: Oxford University Press, 34—9. Pare, Ambroise. 1575. Les oeuvres de M. Ambroise Pare. Paris: Gabriel Buon. Stimson, Rev. Lewis Atterbury. 1948. Words engraved on the fireplace of the Gushing/Whitney Medical Library, Yale University.

Speculum medicinae: Reflections of a Medievalist-Clinician WALTON O. SCHALICK, III

Part One: 'There Is No Such Thing as a Historical Emergency': A Nightmare Consultation Soon after our meeting, a colleague who is both an expert clinician and researcher greeted me one morning with a look of concerned amusement. 'I had a dream last night. Someone asked me to perform a stat historical consult on a patient, and I had no idea what to do/ While the anxiety of this kind of dream is easily transferable into the realm of a kidney specialist being asked to act as an orthopedic expert or a neonatologist as an adolescent consultant, the specific anxiety posed by a lack of historical expertise is an uncommon experience for an academic clinician. This anecdote is doubly revealing. The non-historian cannot fathom the specialized techniques and orientation of the professional historian: when suddenly confronted with a compelling question, lack of historical skills becomes apparent. It is also difficult to imagine moments when historical knowledge is required immediately. In graduate school, my chairman, Gert Brieger, enjoyed reminding those of us with clinical backgrounds that 'there is no such thing as a historical emergency/ He contrasted the frequent urgency of medical decisions with the more contemplative demands of the historian's craft, favoring the latter. With exquisite clinical training and no historical experience beyond the odd undergraduate class, many of my medical colleagues think that historical research is as simple as picking up a pen. Those who attempt to write history find that the challenge comes immediately after the nib contacts the paper. Yet in a fully legal sense, the field of medical history

28 Walton O. Schalick, III

offers credentials at a level of expertise sufficient for court testimony (Rothman, 2003). But urgent consultations do occur within the historical world. One of my professors of medieval history took this matter very seriously. His was a 'methods' course, ranging from numismatics to paleography. Trained in Europe, he had learned the rigors of the 'historical sciences' from those who had helped to create them. T want you to learn where each of the standard reference books in the library is, so that you can find it rapidly. When I was in training, we used to have timed, openlibrary exams. To answer one question in five minutes, you had to know the library location of the Pauly-Wissowad Real-encyclopadie (von Pauly, 1894; now superseded by Cancik and Schneider, 1996); then for the next question you had to know where to find Thorndike-Kibre's Catalogue of Mediaeval Scientific Writings in Latin (Thorndike and Kibre, 1963).' The didactic experience was motivated by professional knowledge: sometimes you are called upon to speak the next day or the next hour on a certain subject, or to pass judgment on an article being submitted to press by a colleague, or to advise an administrator on a thorny question of institutional history. Knowing how to find the answers is a key to any craft. In this sense, 'historical emergencies' happen frequently. Only someone trained in the methods of history is prepared for the challenge, just as a pediatric cardiologist is suited to attend to a child in ventricular tachycardia. Historical exigency is thus a matter of training to meet a precise emergency. The Historian among Clinicians One Friday afternoon of my residency at Boston Children's Hospital, Greg, a pediatrician, asked me what Kierkegaard had to do with breast blackening? He half-remembered something about it from his youth and wanted to be able to discuss it on evening rounds. He was referring to S0ren Kierkegaard's Fear and Trembling, in which the author used four hypothetical descriptions of Abraham's near-death episode with his son, Isaac, to exemplify how one acquires the adult mindset needed to read the Bible. To each fanciful account, he appended a comment about the weaning of a child from the breast - a metaphor for intellectual maturation: 'when the child must be weaned, the mother blackens her breast, it would indeed be a shame that the breast should look delicious when the child must not have it' (Kierkegaard, 1983, 11).

Reflections of a Medievalist-Clinician 29

Kierkegaard appealed to general familiarity with the age-old need to wean infants. Many techniques have been tried, including altering the taste or appearance of the breast to make it unappetizing. To this end, some nineteenth-century women would blacken the breast with soot, dirt, or colorants. In Betty Smith's A Tree Grows in Brooklyn, for example, Gussie's mother covers her breast with stove polish and then draws a horribly grinning mouth around the nipple with lipstick. Gussie shudders every time he sees his mother's chest thereafter (Smith, 1943,168-9). To wean' comes from Old English wenian, to grow accustomed to something different: the child acclimates to foods other than mother's milk. Similarly, the history of infant feeding has many examples of transitions, sudden and gradual, between the popularity of breastfeeding, wet-nursing, formula feeding, and infant abandonment. The first chair of the Department of Pediatrics in Harvard Medical School was Thomas Morgan Rotch (1849-1914). Rotch developed incredibly intricate, personalized combinations of additives to create an artificial infant feed. These combinations were expressed in terms of mathematical formulas. Though scientifically important and perhaps indicative of the rising authority of pediatricians in his time, Rotch's penchant for these artificial feeds encouraged the term 'formula' to be applied to all infant feeding regimens. Oliver Wendell Holmes (1809-94), his Harvard colleague, wryly observed that 'A pair of substantial mammary glands has the advantage over the two hemispheres of the most learned professor's brain in the art of compounding a nutritious fluid for infants' (Holmes, 1891, 276). For young pediatricians, these transitions highlight variations across time in the culture of infant feeding and in medical understanding of infant physiology and the value of breast-feeding. While I could not tell Greg that Kierkegaard had substantially altered breast-feeding practices in the nineteenth century, I emphasized that he was appealing to the popular knowledge of his time. The example could be placed at the beginning of a long string of connections which might be made for Greg's trainees that day. Medical history conveys many lessons to hospital trainees. A month later, I was paged by John, a public health researcher who was completing a grant application, due the next day, for a tuberculosis project in Manhattan. He wanted to know the historical demography of tuberculosis. I quickly pointed him towards several older sources to generate this information. In closing, he thanked me for the references and said, T had no idea history could be so important.'

30 Walton O. Schalick, III John had suddenly realized that historical data formed the scientific background for his contemporary research. In this fashion, history, for the clinician and the investigator, is both a benchmark and a departing point. Almost all scientific articles begin with a literature review to show how the current publication relates to previous work. Similarly, a clinician begins a visit with a 'history' of the patient's condition and previous medical concerns. In these 'stat' historical consults, I was happy to render service to my colleagues, but also thrilled to see that they were asking questions outside the typical biomedical box and that they sought answers historically. Perceived to reside outside that biomedical box, the historian of medicine is consulted for education, for context, or for social perspective. Social perspective is shaped not only by history but also by policy or ethics. One friend, a senior medical historian at a major research university, finds himself a frequent member of ethics panels or Institutional Review Boards (IRBs); he is thought to be able to see the whole forest through the trees in matters involving cultural conflict. I too became involved in planning the ethical features of a multi-center network for much the same reason. Likewise, in cases of institutional precedence or political tradition, the historian lends perspective for immediate decision-making. The Clinician among Historians A history colleague was submitting the final version of a paper for publication; the courier was on its way. He asked me, 'What precisely do doctors mean by "scrubbing in"? Is it the entire experience of gowning, gloving, or just the hand washing?' In his paper, my friend was making an elaborate, metaphorical argument that depended upon understanding the term. Was 'scrubbing in' reserved for cleansing hands specifically, or did it mean a much more elaborate activity? I thought of Joseph Lister's work on antiseptic and aseptic surgery and of William Halsted's creation of rubber surgical gloves to protect the hands of the 'scrub nurse' who later became his wife (Rutkow, 1999). Was this ritual or science? Did it mimic changes in operating room (OR) style? For example, an edict of silence governed the OR of Halsted's student, Harvey Gushing, while since the 1960s, the same space enjoys a musical ambience (MacClelland, 1979; Thompson, 1995; Williams, 1989). Or did science forever alter the nature of practice by surgeons? To respond to

Reflections of a Medievalist-Clinician

31

the historian accurately and rapidly required my historical knowledge as well as my own experiences in the OR. How precisely do physicians usually use that term? My reply was that scrubbing in is much more than merely hand washing; his metaphor would need to encompass the much broader practice. Of course, the physician in a nonclinical department is often asked for medical advice about personal as well as historical concerns ranging from a child's acne to an eighty-year-old mother's dementia. I have been stopped in the history corridor for colleagues' own asthma, pregnancy, and need for Z-plasty. For a pediatrician-medievalist, these situations can be weirdly unnerving. I split my time between those born moments ago and those who died a millennium ago. People who come in between - adults of my own era - are harder to assess. The Clinician-Historian Duality

In college, I majored in physics and in English literature. Two such disparate fields brought me in contact with brilliant teachers who rarely interacted with each other. Paradoxically, some of the best poets - for example, the former poet laureate of the United States, Howard Nemerov - were fascinated by astrophysical explanations of the working of the universe. Similarly, quantum theorists of the twentieth century habitually played with language, punning at the drop of a cat. Entering the dualistic role of the clinician-historian has extended the Heisenbergian uncertainty of my existence. Only when I am interrogated in one realm or the other do I adopt the most appropriate mantle. Un-'observed/ I maintain a duality of identity - just as Heisenberg himself or perhaps de Broglie are said to have done (de Broglie, 1926; Frayn, 1998). But these features apply to all clinician-historians in general. What are those peculiar to the medievalist who is also a clinician? Part Two: A Spring Day on the Quad The sun billows off my yellow gown while my black tam absorbs the radiation as I sit through the ceremony. I am here to 'hood' a friend now completing her medical training. Poignant personal meaning resides in these moments, but their professional resonance is almost shattering in its amplitude. My friend and I are sharing in a tradition that originated in the twelfth and thirteenth centuries (figure 4). Yet the cultural mean-

32 Walton O. Schalick, III

4 Professor and students in the late fourteenth century. Staatliche Museen Preussischer Kulturbesitz, Kupferstichkabinett, Min. 1233, Berlin. ing imparted to the first ceremonies have had social implications that extend well beyond the confines of the hall in which we sit and that are so evident in the exuberant faces of the freshly minted doctors, their parents, and loved ones. One feature of being a medievalist-physician is seeing not just the immediate past of medicine, but also its longue duree. This term, coined by the Annales school of history and described, for example, by Braudel (1980), seems evident in the history of our society's contract with medicine (e.g., Ludmerer, 1999). The Latin title of this essay, 'Speculum medicinae/ literally means 'mirror of medicine/ One value of medical history for clinical medicine is in history's ability to reflect characteristic elements of medicine back to observers, whether they are health-care workers or lay people. One might presume that the image in the medieval mirror would be harder to see, given the distance of time between then and now; sometimes, however, the observer is able to see modern elements all the more

Reflections of a Medievalist-Clinician 33

clearly, precisely because of the 'objectivity' provided by that distance. In struggling to find similarities (and differences) between then and now, the medieval historian must challenge assumptions hidden within himself or within contemporary society. Once a patient chastised me for giving him a diagnosis: 'I don't want the word; I want to know what's gonna happen to me.' I was reminded of the ancient and medieval focus on prognosis rather than diagnosis. He was much more satisfied when I switched to that time-honored emphasis. But these reflections are also seen in four institutions, all vibrant vestiges from the Middle Ages - the university itself, the hospital, the prestige of medicine in society, and the physician-patient relationship. Each originated or was significantly reformed during the Middle Ages with consequent implications for today. The university is a true medieval invention. To protect themselves from outside forces, medieval teachers and students gathered into guildlike entities. In northern Europe, the faculty were known as the universitas; in southern Europe, the students took that name. Together they formed the two halves of the studium generate, or universal school, hence, 'university.' Under the auspices of the Catholic Church, graduates of a studium could be given licentia docendi, the right to teach anywhere in Europe and, for the medical graduate, a kind of liberty to practice in much of the continent. The medical schools started after the studia schools of arts (philosophy), law, and theology, but they were rapidly embraced within the university system. Following its creation, the university became a source of personnel with specialized skills for the royal and ecclesiastical courts. Consequently, those with university training developed a reputation for expertise and a certain respectability, an 'intellectual knighthood' (LeGoff, 1993). Another institution, the hospital, also took a significant step towards its modern form in the Middle Ages. The hospital's history is extremely complex. Its modern form represents an amalgamation of several older institutions, including ideological roots of charity, sequestration, social obligation, education, medical care, and religious duty. Nevertheless, the bimaristan ('place for the sick') of medieval Arabic countries was innovative both in size and educational orientation. With its earliest examples dating from ca. 790 in Baghdad, the bimaristan could serve up to four hundred patients. Such numbers allowed physicians to appreciate the natural history of many diseases, from their first symptoms to their end. Consequently, they were good places to learn medicine. A

34 Walton O. Schalick, III

number of bimaristan had libraries and rooms for lecturing. By the fourteenth and fifteenth centuries, Western hospitals began to assume many of these features, leading to the great teaching institutions of the modern era in Europe (Ackerknecht, 1967; Dols, 1987; Risse, 1999). In exchange for the specialized knowledge and experience that medieval physicians brought to their world, society offered respect and privileges. Sociologists use the heuristic device of medicine's 'contract with society.' That contract began to form in the Middle Ages with the first stages of professionalization. Regulation of medical care, driven from either inside or outside of academic medicine, helped to distinguish between orthodox and unorthodox medicine. The orthodox received greater prestige, self-direction, and a reinforced ability to charge for their socially validated skills (McVaugh, 1993; Schalick, 1997). The consequences of elevating the status of physicians included a shift in balance of power between patient and physician. In antiquity, the physician was akin to an itinerant laborer; patients, particularly the elite and the wealthy, could dismiss doctors summarily. As the 'intellectual knight,' the university physician gained greater status; it was increasingly difficult to demean the learned doctor. By the early twentieth century, physicians held enormous power over patients, not simply over their 'lives,' because physicians controlled information. As a result, the power relationship inverted, giving dominance to the doctor. Since the 1960s, at least in the United States, that pendulum has begun to swing back toward the patient. Nevertheless, strong social effects remain. The body language of a cocktail-party interlocutor when I say I am a physician differs remarkably from that when I say I am a historian. Curiously, it alters again when I say I am a medievalist: aficionados of 'Dungeons & Dragons' or of J.R.R. Tolkien's The Lord of the Rings immediately adopt a conspiratorial tone, seeking my opinion of medieval swordplay or armor; others launch into a disquisition on bubonic plague. A certain longitudinal view is most helpful when it comes to diseases. As at least two authors in this volume have carefully shown, medieval social mechanisms to deal with disease outbreaks have an especially long shadow (Humphreys, 1992, 2001; Markel, 1997, 2004). In 1374, Venetian health workers fashioned the first 'quarantina' or 'quaranta giorni,' meaning forty days, and in 1403, they established the first lazaretto or seafaring quarantine site to stave off the plague's ravages on their maritime city. In November 2002, a case of septicemic Yersinia pestis in New York City provoked the reticent New York Times to describe

Reflections of a Medievalist-Clinician 35 the patient as having 'bubonic plague, the rare and deadly disease that once decimated Europe.' Public health officials used the medieval comparison to advantage: 'We hear the words "bubonic plague" and think about the horrible things that happened in Europe, but they didn't have antibiotics then ... This is not a public health threat, not a situation where anybody else needs to be concerned' (Lueck, 2002). A New York Times editorial put the plague in disquieting perspective, noting that we now have antibiotics and supportive care, but cautioned that the plague is still on a 'list of potential horrors' because of bioterrorism (Editorial, 2002). Likewise, smallpox, the very biologic agent against which U.S. antiterrorist policy now struggles, was first brilliantly and accurately described in the Middle Ages by a Persian physician, Abu Bakr Muhammad ibn Zakariyya Al-Razai (ca. 854-925/935); ironically, he studied medicine in Baghdad. To the West, he was known as Rhazes. His essay 'On Smallpox and Measles' is still one of the best distinctions between smallpox and measles (Rhazes, 1544). The power of his clinical description was generated by his inquisitive experiences in those huge Persian 'hospitals' which allowed observation of a disease at every stage from onset to outcome. Curiously, Rhazes also wrote one of the first works on pediatrics, widely read in Latin medical circles during the Middle Ages (Rhazes, 1549). The poignant ironies of this knowledge are with me daily. Another curiosity about being both a medievalist and a pediatrician is the apparent popularity of the notion that premodern parents did not love their children. It is said that they reserved their emotional energy because of the dramatic likelihood that their progeny would not survive infancy or young childhood (figure 5). In 1960, a French scholar, Philippe Aries, suggested that medieval people (and parents) were deficient in 'an awareness of the particular nature of childhood' and that 'the idea of childhood did not exist in medieval society' (Aries, 1962,128). In subsequent years, a deafening roar of disagreement issued from many medievalists, proving again and again that medieval parents (and physicians) cared - perhaps just as much as modern parents - about their offspring. Interacting with parents and their children on a daily basis, I sense a near biologic imperative in parental nature, so entrenched that it could scarcely have changed in a mere one thousand years. The medievalistpediatrician is no more privileged to recognize truth than the lay medievalist or parent, but she or he is frequently confronted with questions of received wisdom in myriad guises.

36 Walton O. Schalick, III

5 A child being examined for 'abdominal tension7 from a twelfth-century Italian manuscript. Biblioteca Laurenziana. MS Plut 73.16, fo. 29v (Ps. Apuleius, Herbarium), Florence.

Reflections of a Medievalist-Clinician

37

The medievalist may appreciate one other joy more easily than the modernist. Much of what we know about life and medicine in the Middle Ages comes down to us through manuscripts. A medieval manuscript, most often, is a text written by hand onto the surface of an animal skin, usually that of a sheep. The skin was cleaned and prepared with lime, water, pumice, and sometimes ale over a series of days to weeks. The final product of this laborious process was a smooth, white surface ready for any of a variety of handmade inks. The passion which such documents and their contents instilled in their makers and readers is beautifully illustrated in the fictional account of a monkish 'Sherlock Holmes' in Umberto Eco's The Name of the Rose (Eco, 1983). A string of murders takes place in a fourteenth-century monastery. The monk-sleuth embraces newfangled notions of logic, science, and truth, transmitted in the translations of Aristotle from Greek and Arabic into Latin. Through his efforts, we witness the long confession of an old, blind monk, the most learned of his abbey. His motive? - the fear of how one translation would change our relationship with the world and God. In the confession, the murderer arranges his self-immolation, hoping to kill the protagonist as well. Such could be the power of manuscript-driven knowledge. To make a medium-sized manuscript book of good quality cost approximately one hundred thousand dollars (up to fifty times more than it cost for the first printed volumes) (Bennett, 1950). As many as three hundred sheep would have to be slaughtered, and their skins laboriously processed to create full sheets of parchment. Thence, the sheets were folded in halves, quarters, or octavos to form the gatherings that were sewn together to make a book. Once a blank book was assembled (or earlier in many cases), a scribe would spend days, months, or years carefully writing out, or more often copying, a text by hand with a careful, even script. It is hard to imagine the social resources necessary to make a book in the pre-Gutenberg era. Suffice it to say that they were precious and predicated on a bibliophilos, a love of books, well beyond what today's bibliophile might experience. Because medieval books and manuscripts are physical objects, made by hand, variations, from one copy to the next, can often be significant. Scribe A might make one copy and Scribe B, a second. Because of human fallibility, errors, both conscious and unconscious, creep into the final product. Analyzing those errors can reveal the origins of an anonymous text and its copy, its copyist, his patron, and their views. In addition, because the manuscripts come from animal skins, they

38 Walton O. Schalick, III

have a peculiar, tactile quality, which can allow the scholar to feel differences in the document. The animal's skin had two sides, one which faced the outside world, with hair for warmth in life, and another side, which faced the subcutaneous fat and internal organs. Even after processing, the side with hair still retains openings of the hair follicles, just like a man's face after shaving. This side is called the 'hair side/ The inside of the skin has no follicles and so is smooth ('the smooth side'). When a skin was folded, the smooth side always faced another smooth side and the hair side another hair side. Consequently, if a medievalist examines a manuscript and finds a hair side facing a smooth side, this discovery usually means that a page or more had been removed or inserted. Removal might suggest some kind of 'censorship,' while insertion might mean that the additional text was valued over the rest of the book. In either case, the finding can generate a hypothesis about the role of a text, an idea, or a social structure. This 'diagnostic' process resembles that of the physician sleuthing through a challenging clinical case. It is difficult to convey to the nonmedievalist the sensual fascination one experiences in the archives, delving through manuscript after manuscript written hundreds of years ago. One can imagine many players: the animal, which gave its life for the book; the first scribe who scratched out the letters in 1293; and the countless readers who gazed on the same pageSometimes, too, a clinical eye can offer valuable insight into premodern medicine. Guido Majno, a pathologist and world authority on the science of wound healing, has taken remedies from ancient Rome and medieval Africa into the laboratory and found surprising efficacy in some (Majno, 1991). Similarly, M.L. Cameron, an internist in Canada, has looked at the efficacy of Old English, or Anglo-Saxon remedies (Cameron, 1993). From the other side, John Riddle has teamed up with medical scientists to inquire into the scientifically verifiable characteristics of premodern abortifacients (Riddle, 1994). My own initial foray into medical history came during a second-year class, Introduction to Clinical Medicine. This course indoctrinated us with the skills of patient history-taking and physical examination. Interestingly, bedside teaching may also be traced to the Middle Ages (Grendler, 2002). I was fortunate to have a broad-minded professor who would base our grade on a final paper, the topic of which could be anything related to medicine. Excited by the possibilities, I revisited material from my undergraduate thesis and reread Old English de-

Reflections of a Medievalist-Clinician 39

scriptions of the illness of an Anglo-Saxon king, Alfred the Great (ca. 849-99 AD). Alfred, ruler of Wessex, is the only king whom the English have styled 'The Great' because of his role in unifying England, reviving learning, and repulsing Viking invaders. Scholars debate the authorship of Alfred's biography, which, even if written a century after his death, may nevertheless be viewed as a medieval source (Smyth, 1995). Alfred suffered from a pain on his wedding night, described by his putative biographer, the Bishop Asser, in the tenth century. I assigned myself the task of making a retrospective diagnosis. A few scholars had tried before me. I settled on a differential diagnosis and then argued for one condition. In the process, I made two discoveries: (1) there was an enormous gap in our understanding of Old English medicine, and (2) considering medicine in a medieval context allowed me to see features of our own clinical practice in a new and revealing light. By concentrating on the pressing concern of Alfred's doctors, I appreciated the longstanding nature of medical compassion and uncertainty - my own interaction with patients was part of a continuum with doctors past. Alfred's physicians didn't know if he suffered from the ill will of the devil, an evil spell, some unknown fever, or a condition that he had experienced before. Their uncertainty and confusion resonated with mine on the wards - did Mrs Salem have appendicitis or too many spices? Similarly, I saw that mistakes were made because contemporaneously well-intentioned, well-trained physicians were ignorant of medical 'science.' Scientia, a Latin term used in the Middle Ages, denoted 'knowledge,' a branch of learning which systematized facts and methods. Today, the term 'historical sciences' retains some of those overtones. I began to wonder what kind of benighted knowledge I was learning now. That doubt was probably the most valuable clinical lesson I could learn from medieval medicine. We think of medieval physicians as barbaric butchers who bled patients of their vital spirit - their life force - with leeches or steel. Yet these men and women were among the savants of their day. Their knowledge and its limitations prevented them from optimizing health. I was shaken from my student-indoctrinated veil of idealism. The great scholars of my medical school seemed to be able to answer almost any question, stave off death innumerable times, and beat back the night of ignorance. But if the ninth-century physician Bald of Wessex was among the best of his generation, that's what his students and colleagues must have thought of him too. If one thousand years later

40 Walton O. Schalick, III

we see him as ignorant, surely we will be seen as ignorant, in another one thousand years, or maybe sooner. In the Hollywood movie Star Trek IV science fiction proposes this same theme. Dr 'Bones' McCoy of the twenty-third century returns to our own time with his shipmates to save the future of earth. Bones finds himself in a hospital. He encounters an elderly woman heading to dialysis because of kidney failure. 'Dialysis?' he groans, 'What is this, the Dark Ages?' He gives her a pill. In a later scene, as Bones rushes out of the hospital, the woman calls out, 'Doctor gave me a pill, and I grew a new kidney!' For the professional historian, the contrast with medieval medicine is unpalatable, but suggestive. The recognition that our 'advanced' medicine will be rapidly outmoded gives us a strong sense of humility. But likewise, medieval physicians cared for their patients with the best technology that they could offer. We should not demean those past physicians any more than we would wish to be demeaned by future physicians. 'Doctor, the leeches have returned' The Old English term for doctor was laece ('leech') because of the medieval propensity to apply leeches to patients to extract the excess humors that caused illness (figure 6). In a valuable example of 'what goes around, comes around/ leeches are now being actively used in postoperative cases of plastic surgery, during which small, reattached body parts run the risk of degrading because of tissue engorgement. The leeches, with their natural anticoagulants, antibiotics, and anesthetics, act as perfect microsurgical assistants to save the threatened body bits. But the leeches are not working alone. In actuality, we are surrounded by medieval medicine. It is even in our language. We still talk of a friend being in a l?ad humor' or 'melancholic' or 'sanguine' or 'choleric' or 'phlegmatic' or, occasionally, 'bilious.' Each of these terms relates to the theory of humoral medicine, which describes the assemblage of the human body from four humors blood, phlegm, yellow bile, and black bile. Developed in antiquity by medical scholars like Hippocrates (ca. 460-390 BCE) and Galen (ca. 129216 CE), the theory was brought into the Western medical lexicon by university physicians in the Middle Ages. The medieval university has also given us much of the institutional language of our contemporary academic structures - dean, chancellor, professor, scholar, college, lecture. But even our very name, doctor,

Reflections of a Medievalist-Clinician

41

6 A thirteenth-century patient with river leeches attached to his legs. British Library, Sloane MS 2435, fo. 15v (Aldobrandino da Siena, Li livres dou sante), London.

comes from the Latin, doctore, meaning 'to teach/ The different western European names for 'doctor' - medecin in French, artz in German, physician in England, medico, in Italian, medico, in Spanish or Portuguese reflect the moment at which medicine entered the vernacular of those countries (Bylebyl, 1990). So, it is in the longevity of our medical traditions that I see lessons to be learned. Perhaps what we hold onto the longest - words, ideas, and

42 Walton O. Schalick, III

7 A medieval medical 'clinic' of the fifteenth century. Royal MS 15 E II, fo. 165 (Bartholomaeus Anglicus, Des Proprietez des Choses).

social structures, born in the Middle Ages - have the most meaning to us as a culture; they are rather like the teddy bear from childhood or the high school medal kept in an attic box. Conclusion The medievalist in the clinic sees both patients and their surroundings in a very different light (figure 7). The medieval speculum or mirror reflects many modern surfaces and throws them into a new relief. I tell my medical students that as long as the clinician-medievalist does not yield to the temptation to apply a leech inappropriately, the experience can bring valuable new insights. Conversely, the 'clinical gaze/ as the French historian Michel Foucault once termed it, often shapes the medievalist's craft (Foucault, 1963). My questions and my answers differ often from those of my nondoctor colleagues.

Reflections of a Medievalist-Clinician 43 A distinguished historian once enjoined me to continue my studies because I would be one of the few people who could explore medieval Pharmaceuticals in both a scientific and a historic dimension. But the intersection need not be that blatant. To see a young child with hydrocephalus and then return to a medieval manuscript which describes it ineluctably twines the two. Medicine may be far from what it was in the Middle Ages, but, as I sit here in the quad, I can't help but think, 'plus $a change ...' Acknowledgments I wish to thank Ms Lilla Vekerdy of the Rare Books Division of the Becker Library at Washington University in St Louis for assistance in tracking down material on Rhazes. Professors Michael McVaugh, Emilie Savage-Smith, and Fatameh Kasahvarz provided information about the current status of scholarship on Rhazes. I am also grateful to my parents, Judy and Walt Schalick, and my wife, Natasha Winters Schalick, for comments on the biographical materials in this essay. This paper was supported, in part, by funding from the Robert Wood Johnson Foundation in the form of a Generalist Faculty Scholar Award. BIBLIOGRAPHY Ackerknecht, Erwin H. 1967. Medicine at the Paris Hospital, 1794-1848. Baltimore: The Johns Hopkins University Press. Aries, Philippe. 1962. Centuries of Childhood: A Social History of Family Life Robert Baldick (tr. of L'enfant et la viefamilale sous I'ancien regime [I960]. Paris: Librairie Plon). New York: Vintage Books. Bennett, H.S. 1950. Notes on English retail book-prices, 1480-1560. The Library 5: 172-8. Braudel, Fernand. 1980. On History, Sara Mathews (tr.). Chicago: University of Chicago Press. Bylebyl, Jerome J. 1990. The medical meaning ofphysica. In Michael R. McVaugh and Nancy G. Siraisi (eds.), Renaissance Medical Learning: Evolution of a Tradition. Osiris 6:16-41. Cameron, M.L. 1993. Anglo-Saxon Medicine. Cambridge Studies in Anglo-Saxon England, no. 7. Cambridge: Cambridge University Press. Cancik, Hubert and Helmuth Schneider (eds.). 1996.Der neue Pauly: Enzyklopadie der Antike. Stuttgart: J.B. Metzler. Cantor, Norman R 1991. Inventing the Middle Ages: The Life, Works, and Ideas of the Great Medievalists of the Twentieth Century. New York: William Morrow.

44 Walton O. Schalick, III de Broglie, Louis. 1926. Sur la possibilite de relier les phenomenes d'interferences et de diffraction a la theorie des quanta de lumiere. Comptes Rendues de VAcademic des Sciences, 183: 447-8. Dols, Michael W. 1987. The origins of the Islamic hospital: myth and reality. Bulletin of the History of Medicine, 61: 367-90. Eco, Umberto. 1983. The Name of the Rose, William Weaver (tr. of 17 nome della rosa [1980]. Milano: Bompiani). San Diego: Harcourt Brace Jovanovich. Editorial, Plague in perspective. New York Times, 8 November 2002, A30. Foucault, Michel. 1963. Naissance de la dinique. Paris: Presses Universitaires de France. Frayn, Michael. 1998. Copenhagen: A Play. New York: Anchor Books. Grendler, Paul F. 2002. The Universities of the Italian Renaissance. Baltimore: Johns Hopkins University Press. Holmes, Oliver W. 1891. Scholastic and bedside teaching. In Oliver W. Holmes, Medical Essays. Boston: Houghton Mifflin, 273-311. Humphreys, Margaret. 1992. Yellow Fever and the South. New Brunswick: Rutgers University Press. - 2001. Malaria: Poverty, Race and Public Health in the United States. Baltimore: Johns Hopkins University Press. Kierkegaard, S0ren. 1983. Fear and Trembling: A Dialectical Lyric. In Edna H. Hong and Howard V. Hong (eds.), Kierkegaard's Writings, vol. VI. Princeton: Princeton University Press. LeGoff, Jacques. 1993. Intellectuals in the Middle Ages, Teresa Lavender Pagan (tr.). Cambridge, MA, and Oxford, UK: Blackwell. Ludmerer, Kenneth M. 1999. Time to Heal: American Medical Education from the Turn of the Century to the Era of Managed Care. Oxford and New York: Oxford University Press. Lueck, Thomas J. 2002. New Mexico man, 53, is seriously ill with plague at Beth Israel. New York Times, 7 November 2002, A27. MacClelland D.C. 1979. Music in the operating room. AORN Journal, 29: 25260. Majno, Guido. 1991. The Healing Hand: Man and Wound in the Ancient World. Cambridge: Harvard University Press. Markel, Howard. 1997. Quarantine: East European Jewish Immigrants and the New York City Epidemics of 1892. Baltimore: Johns Hopkins University Press. - 2004. When Germs Travel: A Doctor's Stories of Imported Infection. New York: Alfred A. Knopf. McVaugh, Michael R. 1993. Medicine before the Plague: Practitioners and Their Patients in the Crown of Aragon, 1285-1345. Cambridge: Cambridge University Press.

Reflections of a Medievalist-Clinician 45 Rebenich, Stefan. 2002. Theodor Mommsen: Eine Biographic. Munchen: C.H. Beck. Rhazes. 1544. Abubetri Rhazae Maomethi, ob usum experientiamque multiplicem ... Basileae: In officina Henrichi Petri. This work, in Arabic, circulated under the title Fi l-hasba wa-l-judri. In Latin, it was known as Liber de pestilentia. - 1549. De puerorum morbis, et symptomatis turn dignoscendis turn cumndis liber, ex Graecorum, Latinorum, & Arabum placitis excerptus ... Lugduni: Apud Guliel. Rovil. In Latin this text was known as Liber de aegritudinibus puerorum or The Book on Diseases of Children. There is debate among experts on the nature of the Arabic original, the title of which may have been Amrad al-atfal. The text remains in both Latin and Hebrew translations; however recent work suggests no reason to doubt its attribution to Rhazes. Riddle, John M. 1994. Contraception and Abortion from the Ancient World to the Renaissance. Cambridge: Harvard University Press. Risse, Guenter. 1999. Mending Bodies, Saving Souls: A History of Hospitals. Oxford: Oxford University Press. Rothman, David J. 2003. The Fielding H. Garrison Lecture: Serving Clio and the client: the historian as expert witness. Bulletin of the History of Medicine, 77: 25-44.

Rutkow, Ira M. 1999. The surgeon's glove. Archives of Surgery, 134: 223. Schalick, Walton O. 1997. Add one part pharmacy to one part surgery and one part medicine: Jean de Saint-Amand and the development of medical pharmacology in Paris, ca. 1230-1303. The Johns Hopkins University PhD dissertation. Smith, Betty. 1943. A Tree Grows in Brooklyn. Philadelphia: The Blakiston Company. Smyth, Alfred P. 1995. King Alfred the Great. New York: Oxford University Press. Thompson, J.F, and P.C.A. Kam. 1995. Music in the operating theatre. British Journal of Surgery, 82:1586-7. Thorndike, Lynn, and Pearl S. Kibre. 1963. A Catalogue oflncipits of Mediaeval Scientific Writings in Latin, rev. ed. Cambridge: Mediaeval Academy of America, von Pauly, August Friedrich. 1894-. Paulys Real-encydopadie der dassischen Altertumswissenschaft, G. Wissowad (hrsg.) Stuttgart: J.B. Metzler. Williams, T.G. 1989. The history of operating theatre rituals. NAT News, 26: 21-4.

This page intentionally left blank

Facing Epidemics

This page intentionally left blank

A Wartime 'Plague' in Crotone JOHN CULE

I had just qualified in medicine at King's College Hospital in the midst of the Second World War. I was twenty-three years old, a Welsh boy 'from up the Valleys/ where my ancestors had farmed in Cwm Rhondda before the collieries came. I had already been exposed to precocious experience because senior medical students had been elevated to the posts of unqualified house officers in order to make up the deficiency in staff caused by the 'call-up' for active service of fully qualified doctors. I had worked briefly as an unqualified casualty house officer during the blitz on London. My turn for military service came when I qualified in 1943, and I was posted to Italy and found myself in Magna Grecia (Classic Graecia magna), now known as Calabria. It lies well to the south of Rome in an area often referred to as the mezzogiorno, a word that means south as well as midday. Its rural population consists of a kindly and hard-working peasantry in a rough countryside where the summers are extremely hot and the winters extremely cold. In the January mountains, one of our soldiery, incautiously picking up his rifle with an ungloved hand, might find himself stuck to it. Among my duties was the care of the British military contingent, which comprised a small detachment of British Royal Engineers, with some supporting South Africans. We were in charge of the seaport and the great forest of the Sila Grande inland and above us. From this, timber was supplied for the construction of 'liberty ships.' And there was also, among our muster, another particularly motley crew. These men had apparently been found in North Africa, from a wide range of foreign militia, including erstwhile members of the Foreign Legion. I suspected from their subsequent behavior that some were probably deserters seeking easier employment. They had been recruited into the

50 John Cule Pioneer Corps of the British Army. And, lastly, I was to have the care of a large number of Italian prisoners of war, from whom Caporale meccanico autista Marcello Fillini was chosen as my batman driver. He spoke no English. This was a great advantage toward the ambition of both Fillini and myself that I should learn to speak Italian. He made it his added mission to teach me to appreciate Italian literature as well as his version of the special nature of Italian communism. I was very young, isolated, and perforce still clinically inexperienced. I did not even have the comfort of a copy of Price's Text Book of Medicine on which I had so long relied for confirmation of my tentative diagnoses. The army had kindly supplied me with an excellent work on Animal Management 1933, which was to prove its worth much later when, as a civilian, I took up the hobby of driving horses in crosscountry, national carriage events. It contained all sorts of little-known facts such as the comparative speeds of cavalry, horse artillery, and baggage trains. I was thus able later to amaze my carriage-driving friends with an unexpected erudition in these matters. At the time, it was of no practical help. I had been stationed at the seaport of Crotone some time before the incident happened that qualifies for inclusion among these essays. The town was famous as the earlier residence of Pythagoras and the birthplace of the sixth-century BC physician Alcmaeon. According to the Greek historian Herodotus, its doctors had been the best in the world: matters for inspiration, but nothing much of similar importance seemed to have happened there since. My medical inspection (MI) room on the dockside and a hospital ward in the town itself were made available with the help of the Italian Civil Authority. The hospital was staffed by nuns. Crotone was a small market town with wide, dusty, unmetalled streets dominated by the Albergo Imperiale, a hotel not famous for either its comfort or its lusso Italian cuisine; and I recall a small jeweller's shop, whose window display I found fascinating, among a few other stores providing basic domestic support. On the periphery lay the barracks housing the Italian prisoners. The town led down to wide, sandy beaches from which Fillini and I embarked on rare evenings in a small sailing boat that he had acquired. The poorest of the town's inhabitants lived all together in a crowded quarter. It was referred to, by the few British officers, as the Casbah, wherein it was considered most unwise to venture. And that was mid-twentieth-century Crotone. My medical duties extended outside the port to looking after the prisoners and the military engineers working in the mountain forests.

A Wartime 'Plague' in Crotone 51

Fillini and I drove hundreds of miles on our medical tours over very hot, dusty roads in summer and in cold, blinding snowstorms in icy winter. Our 15cwt Bedford pickup truck had an open back and a canvas-sided front. The snow was cleared from the front of the windscreen by a hand-operated windscreen wiper, but it blew in on us from either side. I wiped; Fillini drove. There were hairpin bends and steep declivities. The giant 'hippo' timber lorries, with their enormous loads of logs, posed a particular peril, when sudden braking could send all the logs sliding and crashing through the driver's cab. This - and the loss of Italian fingers in circular saw accidents, the patients arriving with their fingers in a handkerchief - were local surgical hazards. Digital replacement was beyond my competence. The drivers were fatally injured. It was instructive to watch expert axemen fell tall trees so accurately that they could plan to knock a tent peg into the ground exactly where the tree would fall. The Italian timbermen had warned the British that in the vast, high forests of the Sila, it was impossible to move timber in the winter. This was regarded by the British Command as typical of Italian indolence. But the Italians were right in their advice. We were familiar with stories of danger from the briganti, whose area of operation seemed to be confined to the mountains where we worked. We were also aware that the southern Italians had only the Straits of Messina between themselves and the most notorious territory of the mafiosi in Sicily. It added another peril to an exotic picture. The medical tours involved days away from base. I appreciated the thoughtful Fillini, who made it his duty to find comfortable overnight billets to avoid the discomfort of sleeping in or beneath the vehicle: and he did us well. Houses were few and far between. We spent one night in a country manor, a minor castle, owned by an Italian nobleman, whom Fillini had persuaded to give hospitality to the capitano medico. I still remember the sumptuous bedroom and crested silk pyjamas provided after a splendid dinner. As we left in the morning, communist comrade Fillini said with pride and contempt 'and he was one of the great fascisti/ I do not know to what degree the local medical profession, with whom I came in close contact, were able to assess my medical competence or how I inspired any confidence in relation to my evident youth. But I had the panache of proudly wearing a British army uniform (figure 8). Capitano medico sounded gloriously romantic. Tempted though I was to address the ex-legionnaires as 'mes enfants,' I resisted.

52 John Cule

8 The author as a dashing young medical officer, sketched by fellow soldier, A. Sine, at Crotone, Italy, in 1945.

A Wartime 'Plague' in Crotone 53

I had already met the local medical officer of health (MOH) before the 'historical incident' recounted below. A Royal Army Service Corps driver had come to see me complaining of increasing shortness of breath. Indeed he had good cause for his dyspnea, because he had suffered a spontaneous pneumothorax. This I relieved with a large hypodermic needle and syringe. Something more was required in the longer term. I called on the Italian public health clinic to borrow a pneumothorax apparatus. It took some time to explain that I wanted to attempt a reverse procedure - not to collapse a lung but to reinflate it! There followed a nocturnal, nightmare rail journey on the floor of a dirty cattle truck, the patient's chest gloomily lit by a storm lantern, as we traveled some 250 kilometers north to the British General Hospital at Taranto. Months later, one bright, sunny morning, the local Calabrian medical officer of health returned the call with a visit to my billets - two rooms requisitioned in the house of one of the townsfolk. The MOH appeared considerably disturbed and not a little frightened. He announced that there was an outbreak of a terrible epidemic in the Casbah, and in his excitable account painted a picture resembling that of the Black Death at its height. Would I please help him in its diagnosis and treatment? When I was a preclinical medical student at Cambridge University, a well-known Welsh professor of anatomy, H.A. Harris, another Valleys boy, had urged us all that it was not too early to consider subjects for our MD thesis. Aware of our shared Celtic turn of mind toward literature, I determined then to ponder on medical history as my choice. It would eventually be a study of the part played in the age-old story of cremation by the eccentric Dr William Price (1800-93) of Llantrisant. At the age of eighty-three years, dressed in elaborate green clothes and a foxskin hat, Price burned the body of his infant son, named Jesus Christ Price, in a barrel of oil on a Welsh hilltop. This led to his arrest and the trial, from which his acquittal gave heart to the existing Cremation Society, and the building of public crematoria began. But completion of this thesis research was yet to come - in the meanwhile, perhaps the gods had guided me to Crotone and its terrible epidemic. My historical knowledge, even more limited then, first recalled the Plague, the Great Pestilence, as a dread possibility. Surely the MOH would have recognized smallpox if such had been the cause of the mortality. And in that case, I was adequately protected by vaccination. Perhaps the Great Plague of Athens - on the nature of which no one had seemed certain - was about to reemerge in Magna Grecia.

54 John Cule

I felt young and was not sure of my ability of how best both to respond to this heavy responsibility appropriately and to manage to stay alive. There lurked a wish to not expose myself to an avoidable death so early in my career. This particular sacrifice might not even qualify for Horace's exhortation, 'dulce et decorum est pro patria mori.' An imaginative Welsh boy from the Valleys, I was of an inherited 'moody' turn of mind, occasionally given to not a little gloom. As is known to occur even among the most cowardly, the physical fear factor of 'going in' to action was overcome by the shame factor of not doing so. Furthermore, I was flattered by the unexpected request for my help. Was it fitting for a British 'officer and gentleman' to refuse such a call? After all, there had been some survivors from the most terrible scourges. It was impractical to seek advice from my 'superiors' to be found at distant Taranto, almost a day's road journey north. So I ventured into the perilous unknown, the Casbah, a place I had seen only from its periphery, to visit a sufferer, or perhaps two, or even more. The Italian MOH and I went together. We entered a grayish, small, two-storey house. The male patient presented for my opinion looked very ill, and after a full, clinical examination, his diagnosis remained a PUO - pyrexia of unknown origin. The MOH knew this already! I reflected on the words of my teachers. Those of us taught by Professor Harris could never forget him. Was there not some historical association between Greek civilization and its destruction by malaria? Was I not in Magna Grecia? Fortunately, the Royal Army Medical Corps training contained more than the veterinary handbook: we had been enjoined never to neglect the thick blood smear as an essential element in any clinical examination. To complete the reading of the sample I had to borrow a microscope, which was not part of the medical officer's standard equipment. And, of course, therein lay the answer, later confirmed by greater experts than myself - the dreaded Plasmodium falciparum - causing malignant tertian malaria with its pernicious prodromal and varied symptomatology, and sometimes followed by the severe, indeed fatal complication of cerebral malaria. Malaria had been a common enough illness in Italy, particularly in Calabria. The fifth-century BC physician Empedocles, student of Pythagoras of Crotone, had a coin struck in his memory for his deliverance of the Sicilian city of Selinus from a febrile epidemic by draining the local marshes (Cox, 1996). A drainage system in Crotone itself was

A Wartime 'Plague' in Crotone 55

recorded in Greek times. Centuries later, in 1820, General Nunziante began a further drainage system for the Rosarno area of the Gioa Tauro Plain in Calabria. The old methods of malaria prophylaxis achieved by mosquito control had been reinforced under Mussolini's government. The marshes and the watery environment necessary for the propagation of the anopheline mosquito had been drained; mosquitoes had been destroyed by the spraying of Paris Green (copper acetoarsenite) over the water surface or by the use of larvae-eating fish. These and the later use of DDT had not eliminated malaria completely, and both benign tertian and malignant (or Falciparum) malaria still persisted in Calabria. The malaria defences had been eroded by recent warfare, although they were never totally destroyed. Further complicating the situation, quinine, then the essential constituent of anti-falciparum therapy, was not easily available to the Italians. I had found myself a callow clinician in Crotona, Graecia Magna, where perhaps traces of the old miasma lingered to remind me of its history. The 'plague' was arrested, my status and clinical reputation, popularly and fortunately, confirmed - quite possibly even enhanced(?). I venture to think that Professor Harris and the venerable Greek school deserve at least as much credit for this success as the medical and veterinary texts available to me at the time. Acknowledgments I am indebted to Dr Antonio Tagarelli of the Istituto di Scienze Neurologiche-CNR, Contrada Burga at Mangone (Cosenza), for his help in outlining the recent medical history of Calabria. BIBLIOGRAPHY Coluzzi, Mario. 1997. Eradicazione della malaria in Calabria, anofelismo residue e rischio di trasmissione. In Antonio Tagarelli (a cura di [ed.]) La malaria in Calabria. Mangone, CS: Comitato per gli Studi Storici e Scientifici della malaria in Calabria. Coluzzi, M. 2000. Eradicazione della malaria in Calabria, anofelismo residuo e rischio di trasmissione. Parassitologia, 42: 211-17. Cox, RE.G. (ed.). 1996. Illustrated History of Tropical Diseases. London: Wellcome Trust.

Plagues and Patients ROBERT L. MARTENSEN

When I entered Dartmouth Medical School in 1971, two friends gave me classic texts from medicine's past: the Loeb Classical Library translations of the Hippocratic writings from the fifth century BC and Danie Defoe's fictionalized account of the London epidemic of 1665-6, A Journal of the Plague Year. Later, during my residency in San Francisco, another friend made a present of historian William McNeill's Plagues and Peoples. As I went through training and afterward, I have dipped into these books in quiet moments. Although they differ markedly, each has echoed in my medical imagination since my first reading. The following three anecdotes are among those echoes. The Refugee In the San Francisco General emergency room (ER) in 1975, we began seeing a lot of them: refugees from Bangladesh who were sick. When they presented with fevers, I paid particular attention to their skin. In their grayish, light-brown complexions, I could not discern rashes or other signs of illness as easily as I could in whites, blacks, or other Asians. I had traveled a lot, but not to the Indian subcontinent. Even so, Ali looked ill - the rose color of high fever lurked underneath the gray, and perhaps the beginnings of a fine rash. I wasn't certain. He came in the afternoon to the part of the ER that was for walk-ins. 'Nineteen' the chart gave as his age, but he looked younger, perhaps because he also looked frightened. He was skinny to the point of emaciation and accompanied by a slightly older-looking young man, his brother perhaps. Neither one spoke English, and the hospital interpreter could not be found. Fortunately, someone else came forward from the waiting room -

Plagues and Patients 57

another refugee from Bangladesh who'd been in S.F. for a while and knew some English. Ali looked in pain. 'Where does it hurt?' I asked him via our pinch-hit interpreter. He gestured briefly to his legs but then put his left palm to his temple and kept it there. That was where it hurt the most. 'Just the left temple?' I asked. No, all over his head, he said, moving his hand about. As he described his headache to his fellow countryman-interpreter, his agony seemed to grow. Though I was only a second-year resident, I had seen enough ER patients to learn that in terms of pain, sick people often could keep it in until they were asked to give voice to it. Then they opened up, typically in a rush. The pain spoke - sometimes in a groan, rarely in a wail, occasionally with a wince of agony, such as I read on Ali's face. The headache began last night. Not suddenly, but rapidly, like the fever. His temperature was 102.5 degrees Fahrenheit. No relief. He had just arrived by plane from Bangladesh the day before with his brother - a crammed refugee charter, I supposed. I began taking notes. He was a minor. Where were his parents? We needed to get their permission, if possible, before treating him. Father dead, killed in the Bangladesh war a couple of months ago; mother with other children in the shelter in the Tenderloin, which was then a dangerous downtown slum. His head hurt all over, but his neck was not stiff. His body ached and he'd been sweating. Vomited twice after getting up; no blood in vomit. Pulse rapid, respiration normal. Blood pressure low-normal. No remarkable health history, but my understanding of his past was shaky as the language barrier was formidable, even with our volunteer interpreter. No allergies. We gave him two Tylenol 3's (acetaminophen with codeine). 'Walk-In/ as our large room was known, was not a quiet place, and Ali's head twitched with the occasional sharp sound. I began to examine him as his brother and the interpreter crowded in with us in our small, curtained cubicle. 'What of these?' I asked, finding some firm masses under both arms, the size of walnuts. 'Do they hurt?' He hadn't jumped when I touched them, so I didn't know. Yes they hurt; they just started yesterday and they were hurting more. Getting larger. 'And harder?' I asked. He didn't know. 'Anywhere else?' Behind his neck, but bigger ones in his groin. Both sides; started this morning; not really painful yet. 'May I see them?' Some Muslim patients new to our ways, especially men, hesitated or refused to give permission if we wanted to examine their

58 Robert L. Martensen

genital areas or do a rectal exam. All did not refuse, perhaps because he was sicker by the minute. More tender masses slightly smaller than walnuts in both inguinal areas. Firm. Normal, uncircumcised penis and testes. Except for the possible fine rash, the balance of the exam was unremarkable - no pharyngitis, no splinter hemorrhages under fingernails, no cardiopulmonary abnormalities. No abdominal tenderness either, though he didn't really relax for that exam. Rectal deferred. Ali seemed to be deteriorating, although his blood pressure and pulse were stable and his fever improving, and I wanted a diagnosis fast. Before ordering lab tests, we residents presented our patients to the senior physicians, or attendings. Before doing that, I wanted to get my thoughts in order to parse his problem first without losing control of his care. Ali was a diagnostic challenge, and therefore sure to grab the attendings' attention. But I did not want to cost him much time in my deliberation. His problem was obviously serious, and if it was a bacterial infection, which seemed likely, the sooner an antibiotic was started the better. But, except in extreme situations, such as toxic shock, it was stupid to treat without having a solid idea of the etiologic agent. How to construct the differential diagnosis? Acute onset of fever, headache, fine rash (possibly), and generalized lymph node enlargement pointed to infection, certainly. Mononucleosis was common in our ER, but this did not seem like mono. Too rapid an onset of the lymph node swelling and too generalized. And the nodes under his arms were the largest and began to hurt the earliest. Besides, he did not have the sore throat and upper abdominal pain usually found in mono. Tularemia was plausible. The tick-borne infection was not uncommon in northern California; already I had seen several cases. I knew from those experiences that one often did not ever find the site of inoculation. (Ali bore none of the suspicious, small, ulcerative lesions, and I had looked everywhere.) Our patients with tularemia had all been local though, and they all had breathing problems, which Ali did not have. What else could give such a picture? In the mid-1970s, HIV was not yet in the mix. Cat scratch fever? Unlikely, as Ali's symptoms came on too quickly. Something exotic? Ali was from Bangladesh, after all, and by every account the place was being wasted by prolonged fighting. Nothing like forced dislocations and a degraded environment to cause widespread outbreaks of disease. Was anyone else ill in the family? No. It was around this time in our encounter that I began to think of Ali in a different way. Actually, not Ali the whole person but rather the lumps

Plagues and Patients 59 in his armpit. I had never felt anything like those nodes. He said they had come up almost overnight, and they hurt. Yet they were firm, not the usual small soft nodes of common infections and not the right place for the big nodes we saw often in the groins of people with some sexually transmitted diseases (STDs). My sense of his foreignness may have triggered it. If his illness were due to some strange bug from a remote and disturbed place, Brenda, the attending on duty, would be an excellent resource - her specialty was infectious disease and she was a whiz. (She was also one of the greatest teachers and physicians I have known. Years later, when I learned of her untimely death in her early forties, I burst into tears.) But why his armpit first and why so big and so hard and so tender and so fast? In a kind of reverie the word 'plague' came to mind. Could the masses be buboes and the disease bubonic plague? Defoe had described something like them - his mention of 'fatal tokens' on a young woman had stayed somewhere in my mind. I had never seen a case, so I looked it up in one of the well-thumbed copies of Harrison's Principles of Internal Medicine that we kept in the back room. The diagnosis fit. Then I went straight to the dynamic, young attending doctor. As with our many abscess patients, we needed to aspirate tissue from one of those nodes, and I wanted to do it. The ER of the 'old' S.F. General had its own lab for simple stains, hematocrits, urinalysis, and cultures. After listening to my presentation and performing her own patient history and exam, Brenda, the attending, approved the aspirate and routine blood and urine work and cultures of all three along with titres. She agreed that we did not need to do a spinal tap just yet. The headache was the presenting complaint, but the patient had no stiff neck and the signs of illness were too general to go along with meningitis or encephalitis. (CT scans and MRIs were not in the picture back then.) We both thought it might be bubonic plague, or what is now called the bubonic form of Yersinia pestis (formerly Pasteurella pestis). After infiltrating the skin over one of the nodes in Ali's left armpit with a small needle filled with a local anesthetic, I used a larger needle and syringe to withdraw a couple of cc's of cloudy fluid. In the meantime I'd let the Petri dish with its sheet of culture medium warm up next to me in my shirt pocket. After plating the culture medium with the fluid aspirated from Ali's node, I found Brenda, who helped me with the staining. Usually, we limited our investigation to the simple, reliable Gram's stain; according to the book, however, that

60 Robert L. Martensen

stain would not detect plague bacilli. We could do a Wright's stain there in the ER lab, but I had only done one or two and that was back in medical school. With the glass slide bearing the dried and stained aspirate in hand, we turned to the microscope. Generously, Brenda let me look first. Feeling not unlike Edward G. Robinson playing the great German bacteriologist Paul Ehrlich in the 1940s Hollywood biopic, I was thrilled to see bacilli with bipolar staining. Bipolar, as Harrison's text had just told me, was a hallmark of plague, not tularemia. (Of course, Brenda did not need a fresh look at Harrison's to know this.) Cultures and serum titres would confirm our diagnosis, but we were confident enough to start treatment for Yersinia pestis. As one might expect, the news traveled fast, and many people came over to examine the slide. A nurse and I told Ali what we thought. But our waiting room interpreter did not understand the word 'plague/ although she, Ali, and his brother could tell it was serious by our expressions. Then I asked the nurse to give Ali a shot of two grams of Streptomycin. I started an intravenous line - the junior residents placed all IVs back then - arranged for his admission, and took his other specimens to the main lab in the next building. Streptomycin was already long past its glory days of the late 1940s and 1950s, when it was the first antibiotic to be an effective tuberculosis killer; we hardly ever used it. I continue to marvel that a substance that cost perhaps thirty cents to produce may have saved Ali's life. Three days later, Ali was out of the hospital and on to his new American life. Did he ever realize that he had experienced an infection that once wiped out millions in Asia and Europe? What would Defoe have made of his experience? Airs, Waters, Places When I began as an intern at San Francisco General in 1974, many young gay men came to the ER with diarrhea and signs of acute liver disease; some had both simultaneously. The diarrhea usually stemmed from infection with the bacteria shigella and/or the parasite giardia; the liver disease from what was then called 'serum hepatitis/ or 'hepatitis B/ not the more common hepatitis virus, then known as 'hepatitis A/ or 'infectious hepatitis.' We often saw these diseases in straight men, too, as well as in women of no explicit sexual orientation. But their symptoms were usually different, and one could trace a history of contami-

Plagues and Patients 61

nation. At that time, San Francisco had another group in whom serum hepatitis was rampant: legions of heroin addicts. We knew their hepatitis came from sharing infected needles. Whereas the gays were mostly white and all male, the addicts were mostly black, and included many women. Indeed, the hospital then devoted separate, forty-four-bed wards - the 'pus wards' - to men and women, most of them addicted to intravenous heroin with serious extremity infections. Complications among the heroin users on the pus wards were common, and we considered ourselves alert to them. We took pride in our prescience in diagnosing subacute bacterial endocarditis, for example. But the gays, with their repeatedly infected colons and bouts of serum hepatitis, presented a puzzle. Usually we knew what caused their problems, but we could not make sense of how the intestinal and liver infections were spreading. And the numbers of these infections were growing. So, too, were the numbers of young gay men in San Francisco as the old neighborhood of gay bars on Polk Street became eclipsed by the new one, the Castro. Unlike Polk Street, however, and for the first time in San Francisco history, gay men in the Castro formed a residential and commercial neighborhood oriented more or less exclusively to their own needs and wants, an elective ghetto if you will (figure 9). As the Irish - the traditional mainstay of the Castro - gradually sold their homes and commercial buildings to the gays, the street scene went from bars and restaurants whose signs featured leprechauns and clovers to establishments with names like 'The Phoenix' in bold black. In the neighborhood park, elderly people on benches chatting in the sun gave way to semi-naked men lying together on the grass and, at night, humping in the bushes. I learned all this in a direct way when I reconnected with Nick, a former classmate and close friend of one of my college roommates. Handsome, ambitious, and comme ilfaut in accoutrements - his parents had given him a new Porsche as a college graduation present - Nick relocated from Boston, where he had earned an MBA at Harvard, to the Bay Area to attend law school at Stanford and settle in San Francisco. He was 'out' and not a little arrogant; despite his affability, I found him difficult to truly like. I do not recall when the words 'fast-lane gay lifestyle' started appearing in the media or who coined the phrase, but Nick lived it early and hard. Nick wanted to show me the town. Not my San Francisco, which was peopled with relatives and old friends, so much as his, the new world of the Castro. The plan was for drinks at his Upper Market penthouse on a Friday, followed by dinner out, and a

62 Robert L. Martensen

9 'Gay Freedom, 1970.' QQ Magazine, Feb. 1971, volume 3, number 1, back cover. Michigan State University Archive.

Plagues and Patients 63 tour of Castro bars and South of Market dance clubs. I could not stay out late as I had ER duty on Saturday. That was fine with Nick, who wanted to be free to make late-night plans, maybe a sex club if he failed to hook up earlier. Nick seemed happier than I had ever seen him. I could provide a diary of that evening, but two elements may stand for the rest. Indeed, we need go no further than Nick's bathroom in the pre-dinner part of the evening to discover vital clues to the mystery of the gay patients with messed-up livers and intestines. Hanging over his shower door was a long, flexible rubber tube and large enema bag. Nick liked to get fucked - no one said 'anal intercourse' - fist-fucked if the other guy was especially hot and into it, and the tube was for colonic irrigation so he would be 'clean.' He kept no condoms around. Instead, he just took a couple of amoxicillin pills the morning after sex to kill off any nascent gonorrhea or syphilis germs. His gay doctor had given him the tip, and it seemed to work. 'Crabs' were a problem occasionally, and he'd already had serum hepatitis, but just a mild case. No hospitals. No giardia or shigellosis. Sometimes after a vigorous 'drilling' he bled a little, but it soon stopped. He was 'healthy.' Indeed, there were lots of vitamin bottles in the medicine cabinet. Later, at the dance club, the air reeked of poppers, but even then I thought, 'So what?' In 1974, no medical authority characterized giardia or shigella infections as possible venereal diseases. Most of the giardia that we saw showed up in hikers and campers who drank from streams; most shigella came from contaminated food. But after my evening with Nick the venereal route seemed plausible; our gay patients who were sick with diarrhea got it from being fucked by infected guys. The ER attendings I worked with had been thinking the same thing for some time. It seemed so obvious that we soon took it for granted that gay patients with diarrhea, or any sign of liver disease, needed anal cultures, stool cultures, and blood tests for hepatitis in addition to the usual one for syphilis. However, I remember a visit to our ER from a specialist in infectious disease from Moffitt, which was the main university hospital located across town. When we presented a gay patient and our hypothesis of venereal routes of infection through receptive anal intercourse, our visitor looked discomfited, as if he thought, 'This is what I expected, another sordid situation from this sleazy ER. How soon can I get back to Moffitt?' What he said was, and I paraphrase, 'Who knows what the queers do? Maybe it's those drugs they use.' In any case, he was not impressed, not by us and certainly not by the

64 Robert L. Martensen

patient. I was, though. I thought our visitor was rude, not only to the patient but also to my attendings. He seemed to disdain us all, the raunchy gay sex dimension provoking a general taint. Afterward our supervisors urged us to write up our cases, but we did not. Soon after, others did, and the scenario that I have been describing became known as the Gay Bowel Syndrome. It was a portent of horrors to come. Had something similar occurred in the past? In 'Epidemics I/ the Hippocratic writer begins with an account of an 'epidemic' whose sufferers are mainly young men known for wrestling and hanging out in gymnasia. The sickness began with 'swellings' that became 'flabby, big, spreading, with neither inflammation nor pain.' 'Many had dry coughs, which brought up nothing ... Soon after, though in some cases after some time, painful inflammations occurred either in one testicle or in both, sometimes accompanied with fever, in other cases not... throughout the summer and in winter many of those who had been ailing a long time took to their beds in a state of consumption ... Death came more promptly than is usual in consumption ... for consumption was the worst of the diseases that occurred, and alone was responsible for the great mortality' (Hippocrates, 'Epidemics I/ i-ii). After completing a fellowship in emergency medicine, I joined a group of ER physicians who staffed several of San Francisco's major community hospitals. In those days, most gay men with health insurance avoided SF General and its long waits and shabby lobbies in favor of the community hospitals. Quite a few of them did not have regular physicians, preferring community hospital ERs instead. After all, they were young and healthy except for the occasional sexually transmitted disease (STD); why bother with appointments and regular docs? My ER colleagues and I helped care for lots of them, usually for the standard STDs, and gut and liver problems noted previously. Occasionally, my gay friends would show up in the ER with a problem when I was on duty, and sometimes they sent their friends. One night Nick called me at the ER to ask if he might bring his friend Greg to see me. 'Sure. Why?' Greg wasn't breathing right, Nick said. Short of breath? Not right now. But coughing a lot and fever. Bring him over. When he arrived, it was clear that Greg was a very sick man. High fever, rapid pulse, and bubbly sounds in his lungs. This was in the days before routine pulse oximetry, which permits an instant and noninvasive measurement of the blood's oxygen content. We gave Greg supplementary oxygen via a nasal cannula, performed an arterial blood gas measurement, which requires a painful arterial puncture in the wrist

Plagues and Patients 65

to obtain a sample of oxygenated blood, and asked for a portable chest X-ray. Greg could offer no history to speak of. A denizen of the gym and, like Nick, a fast-lane gay, though he did not use that term, Greg had been well until recently. A short bout of the flu last winter, that was it. Oh, some weight loss, which was OK by him. Our impression of severe illness was confirmed in spades by the blood gas and X-ray. On room air, his partial pressure of oxygen (PO2) was only sixty, which meant that the oxygen-carrying portion of the blood was only 10 percent saturated instead of the usual 95 to 100 percent. His carbon dioxide level was dangerously high and his lung fields were a 'white out/ virtually obliterated by patchy infiltrates. His high carbon dioxide level confirmed our impression that his flared nostrils and occasional chest wall heaves indicated he was lapsing into ventilatory failure. If things did not turn around rapidly on bronchodilators - and it did not seem like they would - he would soon need an endotracheal tube and a ventilator. We obtained many samples for cultures and other tests and started broad-spectrum, intravenous antibiotics. While I talked with the admissions office about Greg, I realized that I had no clue as to the organism responsible for the pneumonia. It was late and Greg had no regular doctor at our hospital, but the staff physician on call asked me to cover for him during the night. I agreed. That was around midnight. A few hours later, the ICU called me. Would I come to see Greg right now? He could not breathe and was going down fast. We did a rapid-sequence endotracheal intubation and put him on a ventilator. A day and a half later, he died. I do not know whether anyone ever learned why. The cultures had not even come back yet. Clearly, the antibiotics had not helped. Greg had been to no exotic places, unless one counted the new elective ghetto of the Castro and a 'fast-lane gay lifestyle/ and he had not been chronically ill. True, he had lost weight over the past several months. Perhaps he had a compromised immune system as a consequence of a hidden cancer. That could explain the rapidly lethal pneumonia. We never knew. A few weeks later, a hospital employee, a young gay man who led Christmas caroling at the hospital's annual party, fell acutely ill in the same way and died rapidly in the ICU - in my arms, in fact, as I was on duty that night, too. He also enjoyed a reputation as a party boy. What was going on? In his Journal of the Plague Year, author Daniel Defoe, better known for his novel Robinson Crusoe, wrote in several places about what his (fictional) contemporaries of 1665 considered to be the origins of the

66 Robert L. Martensen London plague of 1665-6. Although Defoe's presentation of himself as an eyewitness was fictional, historians working subsequently have confirmed many of his observations (Porter, 1999). My memories of Defoe's book were hazy; however, I recalled that he had used the word 'infection/ but not in a modern sense. In rechecking his text after these odd deaths, I noted that 'infection' in the early modern period meant the rapid spread of something, be it bad air, or human 'effluvia,' or 'stench.' It could come from 'insects and invisible creatures' and/or their 'poisonous ovae or eggs' (Defoe, 1966, 92-3), and the early moderns assumed that people could pass it from one to another by any contact, ranging from a fleeting touch to what they often termed Venery.' A rather comprehensive list of possibilities, no? What killed Greg, and the hospital employee, and, indeed, my friend Nick, who died in similar circumstances a few months later? Could it be the air? - poppers in the gay dance and sex clubs? I doubted bad air was the cause. What stood out in my mind was the long tube in Nick's bathroom and his purpose in having it. Somehow what these men were dying of was related to fucking - to being fucked, to be more precise - by lots of different people. It seemed like the situation earlier at the General, I thought, when we were dealing with the venereal transmission of giardia and shigella and serum hepatitis. Moreover, it was happening now because of what was going on in the Castro and South of Market - not the daytime Castro of bright paint and cheeky shops, but rather the whole new subculture of which they were but the most visible manifestation. Not only was it socially OK to have sex all the time, with anyone; now, it was actually possible. To put it bluntly (and blunt talk was coming in vogue then everywhere), gay entrepreneurs had managed to colonize the asshole, with San Francisco serving, it seemed then, as its new American capital. Though I have no idea what affected the ancient Greek youths, I recall musing upon the cosmopolitan dimensions of ancient Athens, and in the years since AIDS became present I have read that Hippocratic passage several times. Were the young men who died then having anal sex with each other? Are relevant parallels to be found between the emergence of gymnasia as major public forums for men in ancient Greece, the appearance of the ancient 'epidemic' sketched above, the 'fast-lane' scene of mid-1970s San Francisco, and the epidemic of HIV that followed in its wake? Who knows? Were I able to lead my medical life over and go back to the early 1970s, I would go into infectious disease. At the time, I was intrigued by the illnesses of those first gay

Plagues and Patients 67 guys with their sick guts and livers who came to the SF General ER, but for better or worse, I was not intrigued enough. However rich their conceptual imaginations of disease - 'effluvia/ 'stench/ 'poisonous insects' - Defoe's seventeenth-century Londoners did not have the intellectual frameworks, institutions, or technology to develop germ theory and effective antibiotics. Those accomplishments came later, in the late nineteenth and early twentieth centuries, respectively. Ironically, however, seventeenth-century Londoners knew something that many ordinary San Francisco gay men, city leaders, and gay entrepreneurs in the late 1970s and early 1980s did not know, or knowingly chose to deny: how to comport themselves as safely as possible in the presence of a ubiquitous and lethal epidemic. Most of those Londoners who could, fled. Those who remained attempted to minimize their risky behavior, which they assumed involved extensive public contact. Civic authorities closed facilities that they viewed as dangerous, such as public bathhouses. Granted, the public initiatives were controversial and enforcement rickety. Some merchants in London during the 1665 epidemic behaved much as had their counterparts in the city-states of mid-fourteenth-century Italy, as they faced their great plague that later came to be known as the Black Death. They protested the enforced stoppage of shipping, which was the lifeblood of their enterprises. Religious leaders sought to preserve a sense of community and God's presence through encouraging public worship. Indeed, in the lethal epidemics of the past with which I am familiar, tensions regularly arose between public health initiatives that lead to isolation and quarantine, and the demands of commerce and religion, which depend on traffic and community. In various places, such as 1665 London, the public health perspective, however limited its execution, would gain the upper hand early. Ironically, in the enlightened San Francisco of the early 1980s, the public health perspective became almost hopelessly sidetracked at the intersection of commercial and political interests. It was not until 9 October 1984, almost seven months after the French announced their discovery of what eventually became called HIV, that San Francisco's public health commissioner closed the gay sex clubs and bathhouses. Even that measure did not survive a legal challenge by the owners of the affected establishments, whose attorneys persuaded a local judge to let the facilities reopen a few weeks later provided that they agreed to meet a set of (largely unenforced) safe-sex conditions. Because public and medical responses to past epidemics play along

68 Robert L. Martensen recurrent themes, historical perspectives may perform a considerable service when new epidemic threats emerge. In the case of AIDS in San Francisco, however, it seems as though history and its putative lessons counted for very little. If civic leaders, gay organizers, and gay businessmen had accepted the lessons of history early on, particularly those of historical epidemiology, would things have gone differently? And would things have been different if we physicians, especially local leaders, had taken seriously the micro-histories of our ailing youthful patients in the newly emergent commercial gay culture of the 1970s? I think so. HIV, unlike most epidemic infections, is not easy to catch, and the historical lessons of epidemic management could not be more obvious. Moreover, they do not depend on laboratory confirmation of any specific infectious agent, only recognition that the lack of a robust public health response almost invariably has tended to compound disaster. Just a few adroit political and social moves, in a few neighborhoods, in a few American cities, might have ameliorated, if not prevented, the subsequent enormous human suffering that AIDS has wrought around the world. Brigham and Women's Hospital, 1994 In August of 19931 was in the final throes of my doctoral dissertation in history when I moved to Boston to begin a new chapter of my professional life as a clinician-historian at Harvard Medical School and Brigham and Women's Hospital. Half the time I was to teach and write history of medicine in the Department of Social Medicine in the medical school and the History of Science Department in Harvard College. During the other half, I was to see patients as an attending physician in the ER at Brigham and Women's Hospital. A hybrid job - new for them and new for me. In practice, it meant that I occasionally took the early shift in the ER - 7:00 a.m. to 3:00 p.m. - in order to teach my late-afternoon seminar for medical students on the history of American medicine. Sometimes it went the other way: seminar first, followed by ER duty. While such an incongruous work life might seem schizoid to some, if only because the disciplines are so different, I found it refreshing, and I felt very fortunate. For one thing, it was what I had wanted to do for years, and here I was working at such fine institutions. For another, I didn't find it as strange intellectually as others did. The social history of disease and of medical institutions figured prominently in my survey course in the history of medicine. And ER medicine

Plagues and Patients 69

inherently is a deeply social activity its boundaries delimited administratively rather than by an organ system, like cardiology, or by technology, like radiology. Inner-city ERs, such as Brigham's, are among the few places where the rubber of high-tech hospital medicine meets the uneven and potholed road of contemporary American life, whether it wants to or not. One deals with everything, not just every kind of patient but every kind of factor that might turn people into patients. Perhaps as a consequence, most solid, ER-veteran physicians whom I have known are adept, if uncredentialed, ethnographers of the various groups that pass before us. When ER practice is shown in this light, it may be easy to see that my intellectual shuttle between the hospital and the seminar room did not seem strange to me at all. Indeed, I think the shuttle facilitated my work with a few patients. Here is one example. Even now, in 2003, when I remember Jeanne, I cannot see her without her daughter: the mother in her early thirties, tall and thin, sitting uncomfortably on the examining table, and her daughter, a little girl of perhaps six years, standing beside her, holding her mother's left hand and looking very worried. Jeanne averted her face in repeated grimaces and kept moving her right hand from her right temple to her cheekbone. Her chief complaint was a headache. It had been going on for weeks. She had been to the clinic, where the resident told her it was sinusitis and put her on antibiotics. For a while she seemed better, but not really; today it hurt more. As the only attending physician on duty, I supervised four to six residents, who saw all but the most extreme patients first and then presented them to me. It was standard ER practice. Brigham medical residents were smart and conscientious. Since Jeanne had been to the outpatient clinic a few days before, the resident doctor in the ER called the clinic resident to let him know that she was in our hands. The clinic resident came to see her promptly, and it was only after his examination that I heard about her. 'Sinusitis' was the residents' joint diagnosis, and they recommended that Jeanne continue the antibiotic, take Tylenol 3's for pain, and return to the clinic in three days if she still felt ill. Often the residents recommended extensive diagnostic tests, but not this time. I wondered why, as Jeanne still had a low-grade fever. They were not investigating her because they knew Jeanne personally, or rather they knew her husband, who was a senior fellow in neurology, an MD/PhD then out of town at a conference at the National Institutes of Health in Bethesda. According to them he was a 'phenom' in research and all-around 'great doc' and person. If he hadn't been at the NIH conference, he

70 Robert L. Martensen

would have been with his wife, for, they said, he was devoted to her and their daughter. Jeanne looked very ill and as though she had been so for some time, almost spectral. Even before examining her, my hunch was that she had some dreadful disease. The tip-off that her headache might be more than sinusitis came from the way she moved her hands. During the neurological portion of the exam, which both residents uncharacteristically had abbreviated, I found left arm weakness. Specifically when I asked her to hold her hands out palms up as though she were preaching, her left hand began to turn over and her forearm drifted down an inch or two. A mass in the right brain? I would like to say that my examination of her eyes offered confirmatory evidence of papillary edema - the sign of increased pressure in the brain - but the background light was bright, her pupils symmetrically constricted, and my exam inadequate. I was puzzled, so I revisited her history. Usually, I begin my survey courses in the history of medicine with a section on disease as a historical force, and the readings invariably include part or all of William McNeill's magisterial Plagues and Peoples. McNeill, like Rene Dubos before him, repeatedly makes the point that seemingly tiny changes in social practices have induced large-scale changes in disease patterns. In China, for example, the 1911 collapse of central political authority meant that many southern Chinese began moving northwest into the Manchurian steppe, where they had not formerly been. In Manchuria, the immigrants started hunting marmots for their fur, which then had commercial value. Traditional Manchurian marmot trappers made a point of not killing sick marmots, or at least not skinning them for their fur. Not knowing this, the new immigrants killed and skinned sick and well alike. They should not have, for bubonic plague was epidemic among marmots (as it is today on a periodic basis among rodents in the American West). When batches of the infected marmot pelts arrived at Chinese ports for shipment to the West, a plague epidemic among humans began in coastal China, and within months outbreaks occurred around the world. Might there be something analogous in Jeanne's past? By the early 1990s I had helped care for hundreds of patients with AIDS, and my gut feeling was that Jeanne had AIDS, because that is how she looked. But how could that be? She was a very proper woman married to a very proper man. On requesrioning her, however, I learned that he was her second husband, her first having died in his twenties of some illness that was never diagnosed, in Port-au-Prince, Haiti. They had met in

Plagues and Patients 71 1983, when she was a student in a small town remote from Port-auPrince and he had just returned from a stint working abroad in New York City. Jeanne's CT scan, which we obtained promptly after my exam, revealed a circular mass of six centimeters in diameter in the right temporal lobe of her brain. It looked like toxoplasmosis, which then was a common infectious complication of HPV. When her husband, the neuroscientist, called the ER from Bethesda to inquire after his wife, I told him the news, and he sobbed. Her admission lab tests confirmed the HIV diagnosis; her immune system was shattered. She lasted only a few months and was sick the whole time. Fortunately, if one may use that word in connection with such a woeful situation, Jeanne had not infected her daughter or her husband. If the clarity of a correct diagnosis has value, regardless of the disease prognosis, then perhaps I helped Jeanne. In spending time on her history, I was only doing what we physicians ought to do as a matter of routine. To be sure, no graduate study of history is necessary to practice good medicine. Nonetheless, the disciplinary habits of a working historian have much in common with those of a generalist physician: open and diligent inquiry mingled with skepticism. The fact that I was shuttling from the ER to the history seminar room may have aided me with Jeanne, especially as we had just finished a block on the history of disease. Conclusion These three accounts span the first twenty years of my medical career. Indeed, as I write this I find myself in a reverie in which the Hippocratics, Defoe, and McNeill move back and forth through my memories of these people and their plagues. The young Bangladesh refugee and the gay men I saw early on at San Francisco General, like Defoe's Londoners of 1665, remain alive in my imagination, as does Jeanne's daughter holding her mother's hand. So, too, do the various modes of history that I have experienced in my medical life. Historical inquiry may function in several different ways: as a celebration of a particular heritage, as an accurate chronology of the past, or even as hanging judge. For practicing physicians, history's vital role seems obvious, if only because virtually every physician, like other professionals serving clients, is de facto a historian. Our work begins by taking people's histories, and it behooves us to do it well. Without intending to do so at the outset, I now see that I have put these three

72 Robert L. Martensen functions of history in this narrative. Developing knowledge about the past and learning to recognize its resonance in the present will enhance a physician's ability to master the ineluctable modalities of caring for sick patients, even as history provides those open to its perspectives with a deeper sense of identity and place. In terms of the medical profession and public policy, writing these accounts persuades me that an increased historical sensibility among a few might have made a difference for the better in our global experience of HIV and AIDS. Specifically if political leaders and gay businessmen in New York and San Francisco and a few other places had taken seriously the history of epidemics and not dilly-dallied in the early 1980s about a vigorous public health response to what was then known as the emergent 'gay plague/ might Jeanne have avoided infection with HIV in Haiti? Although it is a question that cannot be answered, I maintain that it is one worth keeping in mind. BIBLIOGRAPHY Defoe, Daniel. 1966. A Journal of the Plague Year: Being Observations or Memorials of the Most Remarkable Occurrences, as well Public as Private, which Happened in London during the Last Great Visitation in 1665. Written by a citizen who contin ued all the while in London. Never made public before. Anthony Burgess and Christopher Bristow (eds.). Harmondsworth, UK: Penguin. Dubos, Rene J. 1961. Mirage of Health; Utopias, Progress, and Biological Change. Garden City, NY: Doubleday.

Hippocrates. [1923] 1995. Epidemics I, W.H.S. Jones (tr.). In Hippocrates with an English Translation (8 vols.). Vol. 1. Cambridge, MA, and London: Harvard University Press, 147-211, esp. 149-51. McNeill, William Hardy. 1976.Plagues and Peoples. Garden City, NY: Anchor Press. Porter, Stephen. 1999. The Great Plague. Thrupp, UK: Sutton Publishing.

Coping with the HIV/AIDS Epidemic CHARLES S. BRYAN

In I960, someone on the faculty of Harvard College assigned our entering freshman class a summer reading list that included C.P. Snow's classic, The Two Cultures and the Scientific Revolution. I read the book but doubt that I grasped what I now perceive to be its message: science should always be informed by values derived from the humanities. I went off to college listing geology as my intended major, but was in reality quite undecided about what to study. My father was a physician, and I had seen him have a heart attack at a relatively young age. I was somewhat skeptical of my friends who were setting out to be doctors. Were they seeking the surest way to uppermiddle-class social status without really knowing what they were getting into? However, after discovering that I enjoyed studying just about anything, I chose as my major a premedical curriculum. My father, who had never encouraged me to study medicine, told me about a five-year program at the Johns Hopkins University School of Medicine. Successful applicants entered after two years of college, spent a transition year completing their preparation, and then began the regular medical school curriculum one year ahead of schedule. I applied and was accepted. Dad gave me his copy of the third edition of Aequanimitas, William Osier's collection of inspirational addresses. Had it not been for early acceptance to medical school, I might have become a full-time historian. I trace my interest in history to my sophomore year at Harvard. To offset the rote memorization of organic chemistry, I signed up for a course known on campus as 'Mint Juleps': the history of the American South before the Civil War. I loved it. The next semester I took a course with the sociologist David Riesman; for the assigned term paper, I

74 Charles S. Bryan

wrote about slavery on a single plantation just before the Civil War in my home state, South Carolina. At Johns Hopkins that fall, I arranged to write a thesis on this topic for David Donald, the Civil War historian. His rigorous methodology impressed me. The historian, like the scientist, must be thorough, skeptical, and open to new interpretations of the data. Could history complement my desire to be a doctor? I approached Owsei Temkin, director of the Institute for the History of Medicine at Johns Hopkins, about the possibility of a summer in history before embarking on the traditional medical school curriculum. I soon occupied a desk in an office shared by his two doctoral students, Donald Bates and Gert Brieger. My project was the decline of bloodletting during the mid-nineteenth century. It seemed that bleeding went out of fashion, but nobody could explain why. I learned that there is often a discrepancy between what doctors know and what they do. What doctors do in practice often takes into account various considerations unrelated to the edicts of medical science (Bryan, 1964). My new interest in medical history and the time spent finishing my projects with professors Donald and Temkin complicated the transition to the formal medical school curriculum. Unwittingly, I had defined my ideal life as a seamless series of term papers. Such a lifestyle does not mix well with medical school, which demands the mastery of an incredible array of facts and concepts. To the rescue came a poem I'd come across in Punch magazine, 'The Judgment' by R.P. Lister (1960). The poem, in its entirety, is reproduced here with permission of the publisher: I dreamed the angels came to me by night. They stood about my bed, severe of mien, And asked one Question: 'What is enstatitel" 'It is an orthorombic pyroxene/ I said, and as I spoke I heard the jangle Of planets crashing down the cosmic seas. I added, hastily: 'Its cleavage angle Is eighty-seven (more or less) degrees. If it were fifty-six, not eighty-seven, We should, quite clearly, have an amphibole.' At this they swept me, singing, up to Heaven Where angel hands received my battered soul.

Coping with the HIV/AIDS Epidemic 75

The message, as I saw it, is that we are ultimately held most accountable for whatever we allow our fellow humans to pay us to do. There is no substitute for competence. I pasted the poem above my desk as, for three years, my interest in history lay dormant. Pathology became my new love. Graduating from medical school, I began an internship in pathology at Johns Hopkins. Looking back, I'm not entirely sure why I left pathology so quickly. Perhaps it was because one of my former classmates asked each time we passed in the hospital corridors, 'Charley, how's your slabside manner?' I thought that I would always have self-doubts if I didn't at least try clinical medicine, which explains why I went to Vanderbilt the next year for an internship in internal medicine. Some of my friends suggest that, by studying pathology before taking up clinical medicine, I subconsciously followed a path blazed by Osier. Be that as it may, I soon found fascination in just about all of internal medicine. It was perhaps for this reason that I chose to subspecialize in infectious diseases, which does not require commitment to a single organ system. In 1974, I returned to Columbia, South Carolina, in private practice as the first, board-certified, infectious diseases subspecialist in the central part of that state. Rumors of a new medical school in Columbia featured prominently in my decision to return. Walking into the hospital one morning during my first year of practice, I casually conveyed my interest in writing to Edward Kimbrough, editor of The Journal of the South Carolina Medical Association. He invited me to become assistant editor, and I succeeded him as editor two years later. In that capacity I came to the attention of Dr Joseph I. Waring, a retired pediatrician in Charleston, South Carolina, who was the dean of the state's amateur medical historians. Although he died shortly thereafter, he became a role model. Meanwhile, the new medical school opened and I was offered the opportunity to join the charter faculty as director of infectious diseases. Looking back, I see that these three interests - medical history, medical journalism, and infectious diseases placed me at the center of the public response to that greatest of twentieth-century epidemics, the acquired immune deficiency syndrome or AIDS. In retrospect, I saw a patient who almost surely died of AIDS slightly before the first cases were reported from Los Angeles in 1981. Thereafter, I began seeing patients who had acquired the disease elsewhere and had come back to South Carolina to die. The disease was fascinating yet frustrating. I saw things I never thought I'd see, but we were powerless to help; the patients inevitably died. In 1987, I heard at a

76 Charles S. Bryan

national meeting the results of the first clinical trial of AZT (azidothymidine; now also known as ZDV, or zidovudine). The randomized, placebo-controlled trial had been terminated early when it became apparent that patients who received the drug were surviving longer than those who got the placebo. Various national experts soon recommended AZT for anyone with a diagnosis of human immunodeficiency virus (HIV) infection, even if the patient were asymptomatic and the CD4 lymphocyte count relatively normal. I hesitated to follow this recommendation since, by analogy with other chronic infectious diseases such as tuberculosis, it seemed to me that more than one drug would be needed to delay the emergence of drug-resistant strains. From my first paper on bloodletting, I recalled a quotation I'd used from a nineteenth-century Philadelphia surgeon, Samuel W. Gross: 'How sadly we are influenced by authority and fashion in a matter of dearest interest to society/ I therefore recommended AZT only for people with laboratory or clinical evidence of deterioration. As it turned out, the placebo-controlled trial had been stopped prematurely. Patients who received AZT quickly developed resistance to the drug, limiting their future treatment options; in reality, AZT bought patients only about six months of quality life. A few of my early patients may be alive today because of my historically informed therapeutic conservatism. However, it was in the public arena that medical history contributed most to my role in this new epidemic. Throughout the United States, a nervous public turned to infectious diseases specialists for answers. Previously, even our fellow physicians regarded us as curiosities. Hadn't infectious diseases been largely conquered? Overnight, many of us became public figures. We received frequent invitations to speak on television and radio, to civic and church groups, and, of course, to medical audiences of all types. We taught the basic facts about the disease, reiterated that mosquitoes did not transmit it, and addressed social issues as well as medical issues. Most of the early cases occurred among men who had sex with men, and my interactions with these dying men prompted me to advocate a much more tolerant perspective on sexual preference compared with the prevailing attitude in South Carolina. I usually peppered my talks with examples from the plagues of the past. Meanwhile, the patients kept coming, and they kept dying. My practice was extremely busy, and it became increasingly difficult to take care of patients and, at the same time, serve on numerous committees and task forces. Like my infectious diseases colleagues elsewhere, soon I had burnout.

Coping with the HIV/AIDS Epidemic 77 A central issue to health care workers was the risk of acquiring the disease in the course of patient care. My generation of physicians had gone to medical school with little expectation that taking care of patients could lead to a fatal, untreatable disease. Now that had changed. Did physicians, nurses, and others have a moral duty to care for patients with HIV/AIDS at their own risk? If so, why? Many medical organizations answered 'yes/ but it seemed to me that most of the people making these pronouncements were not on the frontlines of practice where blood exposures are common. I concluded the central moral issue posed by HIV/AIDS in the health care workplace was courage. A medical student and I found a useful definition of courage proffered by a Canadian philosopher, Douglas Walton: the use of both moral and practical reasoning to overcome obstacles toward the achievement of a socially desirable goal. Moral reasoning requires altruism; practical reasoning requires persistence (Walton, 1986). Comforted and excited by this modest insight, I wrote several editorials about HIV/ AIDS in our state medical journal. Then, my interest in medical history led me to an example of courage that seemed highly relevant to the dilemma for health care workers caring for patients with HIV/AIDS. Warren Holland, the president of our county medical society, asked me to prepare a program on its history. I began to spend spare time reading the society's old minutes in the manuscript room of the South Caroliniana Library in Columbia. The nine dusty volumes disclosed how each generation of physicians had aspired to lofty ideals only to regress every time that their basic security needs were threatened. One day, I came across in these minutes the obituary of one Theodore Brevard Hayne (1898-1930), from Congaree, South Carolina. I drove to a country churchyard and read the inscription on Hayne's obelisk: 'THEODORE BREVARD HAYNE, M.D., DIED OF YELLOW FEVER IN LAGOS, NIGERIA, WEST AFRICA, INTERMENT AUG. 24, 1930. GREATER LOVE HATH NO MAN THAN THIS, THAT HE LAY DOWN HIS LIFE FOR HIS FRIENDS.' I wept. Hayne, a native of central South Carolina, was an unusually likeable young man, a favorite of everyone who knew him (figures 10, 11). The son of South Carolina's health officer, he began to work in malaria control as a teenager. Some of his work involved deterrnining the flight patterns of mosquitoes. Mosquitoes were stained with an aniline dye and then released. New mosquitoes captured at another site were then tested for the presence of the dye. He was not an especially good student; when he entered The Citadel, he made a bet with his best

78 Charles S. Bryan

10 Theodore Brevard Hayne (1898-1930). Private collection of Dr Charles Bryan.

11 Hayne (on right) at work. Rockefeller Archive Center, Sleepy Hollow, New York.

80 Charles S. Bryan

friend as to which of them would finish last. After college, he took a job with the Public Health Service doing malaria research. Inspired, he went to medical school and, after internship, joined the International Health Board of the Rockefeller Foundation and went to West Africa to study yellow fever. Henry Beeuwkes, director of the Rockefeller Foundation project at Yaba, Nigeria, soon wrote: Doctor Hayne is one of the most satisfactory men we have had in West Africa. He has a wonderfully attractive personality and it is a pleasure to have him about the place. At the same time he is an indefatigable worker; has a good mind and readily adapts himself to local conditions. His experience in the field and practical knowledge concerning malaria and entomology are proving valuable to us.

Toward the end of his eighteen-month tour of duty Hayne was placed in charge of the entomology laboratory at the Yaba compound. He was thus in care of the broods of mosquitoes infected with the yellow fever virus, which were being used in experiments to infect rhesus monkeys. Yellow fever research was notoriously dangerous. Five researchers associated with the Rockefeller Foundation in various locations, including the celebrated Hideyo Noguchi, had previously died of the disease five out of a full-time workforce that never numbered more than twentyseven investigators. Hayne returned home, married, and after a brief honeymoon went back to Yaba for a second eighteen-month tour with the plan that his wife, Roselle, would soon join him in Africa. He resumed his work with the infected mosquitoes, knowing that he could get yellow fever if a single mosquito escaped from the netting. Using the methods that he had employed as a teenager, he conducted flight experiments with those mosquitoes, which by then were suspected of perpetuating 'jungle yellow fever' (as opposed to the common household mosquito Aedes aegypti, which spread 'urban yellow fever'). Then he received a letter from Roselle, with the news that she was pregnant. She could not join him, since the authorities believed that West Africa was no place to have one's baby. Hayne debated whether to resign. Not long after deciding that he would complete his second tour of duty, Hayne developed yellow fever and died. At a time when physicians, other health care workers, and the general public were debating ad infinitum the moral duty to care for fellow humans who might be infected with HIV, Hayne's story assumed for

Coping with the HIV/AIDS Epidemic 81 me a special importance. His is one of many examples in medical history in which humans cared for their fellow humans and studied disease at their own risk. I began to include Hayne's story in my talks about HIV/AIDS to audiences of all types. I wrote several editorials about Hayne for our state medical journal. Eventually, I met relatives of Hayne who possessed numerous letters that he had written to his mother from West Africa. This correspondence, combined with records kept at the Rockefeller Archive Center in Sleepy Hollow, New York, enabled me to honor Hayne by writing his biography (Bryan, 1996). However, the larger message of Hayne's story was and remains for me his example in courage, as defined by Walton. I asked my colleagues and myself, 'Can we do the same?' The historian Charles E. Rosenberg suggests that epidemics can be considered as plays with four acts, as follows: progressive revelation (Act One), managing randomness (Act Two), negotiating a public response (Act Three), and subsidence and retrospection (Act Four) (Rosenberg, 1992, 293-304). In developed countries such as the United States, HIV/AIDS has moved largely into Act Four. A new class of drugs known as protease inhibitors became available in 1996, launching what we now call highly active antiretroviral drug therapy (HAART). For those patients who could take the drugs exactly as prescribed, HIV infection became somewhat like insulin-dependent diabetes mellitus: a nuisance, indeed a nuisance that might ultimately shorten life expectancy, and yet one that could be managed extremely well. For health care workers, caring for people with HIV/AIDS may still involve a measure of personal risk, but there is reassurance in the availability of HAART for post-exposure prophylaxis: in the event of accidental exposure, one can take drugs to reduce the likelihood of permanent infection. Looking back on those early years of the epidemic in the United States, what did we learn from the experience? What did the epidemic mean? Elsewhere, I have reflected on the possible meaning of HIV/ AIDS as a kind of warning to Homo sapiens, another indicator that we are not managing this fragile planet very well (Bryan, 1990). I also reflected on the significance of the disease for the field of bioethics, the first definition of which was as 'a science of survival' in which 'ethical values cannot be separated from biological facts' (Bryan, 2002; Potter, 1970). At present, my personal retrospection on HIV/AIDS focuses on a problem of current concern with medical education circles: the definition of medical professionalism. The essential components of medical professionalism, it seems to me,

82 Charles S. Bryan

are competence, caring, and social responsibility. 'Caring' is a highly nuanced word. I perceive caring as a graded spectrum, as follows: beneficence or 'doing good'; empathy or 'in-feeling'; sympathy or 'likefeeling'; and compassion, which from its Latin roots, literally means 'to suffer with' (Bryan, 1997). Within medicine, what are the relative roles of competence and caring in its highest sense, compassion? In the summer of 1966, before my senior year in medical school, I won a traveling fellowship in the history of medicine sponsored by the University of Kansas. I went to London to study another aspect of the history of bloodletting (Bryan, 1968). There, at the Tate Gallery, I took a long, hard look at Sir Luke Fildes's classic painting, The Doctor (1891) (figure 12). Fildes based his composition on the physician who had presided over the death of the artist's own child. A well-dressed but weary physician studies a sick child as dawn breaks through the windows of a modest home. The parents wait anxiously in the background. The physician's open body language and unhurried concern capture what I now consider the essence of medical professionalism: service that clearly transcends self-interest. We feel pain not only for the child but also for the doctor, who has stayed up all night, in part because he has nothing to offer except his concern. Fildes's physician has joined his patient as a fellow sufferer, an exemplar of compassion in the strict sense of this much-abused word. Yet who would not readily trade in Fildes's doctor for any physician of the early twenty-first century who, however insensitive he or she may seem, brings to the bedside a curative prescription? The HIV/AIDS epidemic allowed, indeed forced, infectious diseases physicians like myself to live through what amounted to a truncated history of medicine as mystery yielded to molecular biology. Interviews carried out by Drs Ronald Bayer and Gerald Oppenheimer establish that most of us 'AIDS doctors' in the United States had a great deal in common (Bayer and Oppenheimer, 2000). We were young and idealistic. We had chosen infectious diseases, in part, because we did not want to assume primary responsibility for dying patients. We did not want to be, for example, oncologists supervising chemotherapy, nephrologists supervising dialysis, or pulmonologists supervising the breathing treatments for victims of end-stage chronic lung disease, the 'pink puffers' and 'blue bloaters.' We wanted to be consultants, 'doctors' doctors,' who cogitated over especially difficult diagnostic dilemmas, made recommendations, and departed. The curative potential of antibiotics usually enabled us to feel good about ourselves.

12 Luke Fildes, The Doctor, 1891. A reproduction owned by Queen's University, Kingston, Ontario, Canada, based on the original painting, which hangs in the Tate Gallery, with permission.

84 Charles S. Bryan My medical school classmate, Donna Mildvan, who was among the first to describe AIDS in New York City, characterized the early years of the epidemic as 'medieval' (Bayer and Oppenheimer, 2000, 63). Like most physicians over most of recorded history, we had little or no idea of what was causing young and previously healthy patients to suffer and we had little to offer them. The discovery of the virus in 1983 briefly bolstered our confidence, as did the advent of AZT, until we realized that the trial had been terminated prematurely and the virus could become resistant to the drug. Nearly all of us experienced burnout exhaustion, frustration, and disillusionment - as more and more patients passed through our practices on the way to their graves. Some of us left practice for administration, research, or public health. With the introduction of HAART in 1996, the gloom began to lift. On the diagnostic side, new molecular technologies made it possible to measure the quantity of HIV in a person's blood (that is, the Viral load'). It is now commonplace for patients infected for many years to lead normal lives, with undetectable viral loads. Before HAART, we 'AIDS doctors' found ourselves in roles we'd never imagined. Lacking effective treatment, we worked long hours often with little or no hope of reimbursement. When our patients crept toward the end of life, we made house calls, often merely for the purpose of showing that we cared. My anxieties back then centered mainly on whether I was offering my patients sufficient emotional support. HAART changed all that. Patients who are able to afford and take their medications seldom require the kind of exhausting attention that was formerly necessary. My anxieties today center mainly on whether I am using the drugs correctly, since regimens are fairly complicated and most of the drugs have side effects, including interactions with other drugs. In summary, scientific progress between 1981 and 1996 transformed the ethos of medical care for this disease from one based largely on compassion (in the strict sense of 'suffering with') to one based largely on competence. The three dimensions of medical professionalism, as I suggested, are competence, caring, and social responsibility. Their relative importance varies according to the availability and affordability of relevant technology. 'Compassion' in the strict sense of 'suffering with' assumes importance mainly when technology is lacking. Recently, I proposed a tiered definition of medical professionalism, a distinction between 'basic' or 'generic' professionalism and 'higher' professionalism. When relevant technology is available, 'basic' or 'generic professionalism' - doing the right thing well - may be all that is necessary (Bryan, 2003). The physi-

Coping with the HIV/AIDS Epidemic 85

cian should, of course, care about the patient, yet the special form of caring that we call 'compassion' is unnecessary. When relevant technology is unavailable, the physician is called to a higher order of caring, to become compassionate in the strict sense of 'fellow sufferer/ Some physicians complain about the 'commodification' of medicine, the tendency of medicine to be simply another commodity to be purchased in the marketplace. This is not necessarily a bad thing. However, if medicine is to retain its place as a noble profession, physicians must demonstrate what I call 'higher professionalism/ service that clearly transcends self-interest. Has my interest in medical history made me a better doctor? I hesitate to answer in the affirmative, since to do so would be to assert superiority over dedicated and effective colleagues whose interest in history is marginal at best. But my interest in medical history has certainly made for a richer and more rewarding life. It dared me to find courage, structure, and even purpose in the face of new challenges. And I believe that my early interest in the history of slavery enhanced my sense of social responsibility. One of my roles today involves supervising a Ryan White grant to care for uninsured and underinsured patients with HIV/AIDS, most of them being disadvantaged African-Americans. I am especially concerned about the plight of African-American women with the disease. Typically, AIDS is but one of their major problems; to treat the disease we must appreciate its social and historical context (Whetten-Goldstein and Nguyen, 2002). Danielle Gourevitch, a thoughtful French medical historian, recently opined: Today's technical and dehumanized medicine has no past, has no cultural language, has no philosophy' (Gourevitch, 1999). She cites Sir William Osier, who died in 1919, as 'the last maitre a penser for a noble-minded general medicine.' Osier's most important contribution was his reconciliation of the old humanities with the emerging new medical science, his rephrasing of the Hippocratic maxim that 'where there is love of humanity, there also is love of the art.' I am grateful to my Dad for introducing me to Osier and to whomever it was who assigned the entering class of 1964 C.P. Snow's The Two Cultures and the Scientific Revolution. Studying the humanities promotes humanism, which will always remain essential to the practice of medicine. BIBLIOGRAPHY Bayer, Ronald, and Gerald M. Oppenheimer. 2000. AIDS Doctors: Voices from the Epidemic. An Oral History. New York: Oxford University Press. Beeuwkes, Henry. 1928. Letter to Frederick R Russell, 1 November. Personnel

86 Charles S. Bryan file, Theodore B. Hayne. Rockefeller Foundation Archives, Rockefeller Archive Center, Sleepy Hollow, New York, Record Group 1. Bryan, [C.S. as 'L.S.' Having always been called 'Charley' by my family and close friends, I had my name legally changed in 1966]. 1964. Bloodletting in American medicine, 1830-1892. Bulletin of the History of Medicine, 38: 516-29. - 1968. The William Osier Medal Essay: Dr. Samuel Dickson and the spirit of chrono-thermalism. Bulletin of the History of Medicine, 42: 24-42. - 1990. Is there divine justice in AIDS? Why now, and not before? Southern Medical Journal, 83: 199-202. - 1996. A Most Satisfactory Man: The Story of Theodore Brevard Hayne, Last Martyr of Yellow Fever. Charleston, SC: Waring Library Society. - 1997. Care carefully. In C.S. Bryan, Osier: Inspirations from a Great Physician. New York: Oxford University Press, 133-60. - 2002. HIV/AIDS and bioethics: historical perspective, personal retrospective. Health Care Analysis, 10: 5-18. - 2003. The Theodore E. Woodward Award. HIV/AIDS, ethics, and professionalism: Where went the debate? Transactions of the American Clinical and Climatological Association, 114: 353-67. Cronin, A.J. 1965. The Citadel. Boston: Little Brown. Gourevitch, D. 1999. The history of medical teaching. Lancet, 354: SIV33. Lister, R.P. 1960. The judgment. Punch (31 August), 309. Osier, William. 1943. Aequanimitas, 3rd ed. Philadelphia: Blakiston. Potter, V.R. 1970. Bioethics, the science of survival. Perspectives in Biology and Medicine, 14: 127-52. Rosenberg, C.E. 1992. Explaining epidemics. In C.E. Rosenberg (ed.), Explaining Epidemics and Other Studies in the History of Medicine. Cambridge: Cambridge University Press; 293-304. Snow, C.P. 1959. The Two Cultures and the Scientific Revolution. The Rede Lecture, 1959. Cambridge: Cambridge University Press. Walton, D.N. 1986. Courage: A Philosophical Investigation. Berkeley: University of California Press. Whetten-Goldstein, Kathryn, and Tran Quen Nguygen. 2002. 'You're the First One I've Told': New Faces of HIV in the South. New Brunswick, NJ: Rutgers University Press.

Reviving Defunct Diseases

This page intentionally left blank

'La Crise' ANNE MARIE MOULIN

I remember a forty-year-old man who was admitted to Paris hospital, where I was working as a resident back in the 1970s. He had a high fever and a bad cough. The chest X-ray displayed a 'white out' in a part of his lung, the classic textbook image of acute lobar pneumonia of the type usually caused by the pneumococcus germ (as it was called back then). I immediately started an intravenous line for treatment with penicillin and then chatted with him for a half-hour or so as he lay calmly in his bed. The man was otherwise healthy, but he had been unemployed for six months, abandoned by his wife, and reduced to living in a rental facility for singles. He admitted to being so depressed that he had given up looking for work. Having no doctor, he did nothing when he first felt feverish, until he was very sick. In our conversation, he spoke repeatedly about his wife, 'a real bitch,' whom he charged with all his sufferings, solitude, and loss. I left him at 6:00 p.m. with the antibiotic running and oxygen flowing. The next morning he was gone. He had died in the middle of the night, and I - the resident on call - had not even been paged. My astonishment turned to dismay when the department head summoned me to account for this unexpected death in one so young. Angry and defensive, I pleaded that he had suffered a straightforward case of pneumonia with no signs of respiratory distress or cardiac failure. As was the custom in our hospital, I was obliged to perform his autopsy. I recall that we found a 'hepatized lobe of lung,' typical of acute pneumonia, and nothing else. What a shock it was to have to cut into this person whom I had just begun to know and like. So different from the anonymous dissections of my previous training. His inexplicable death haunted me for days. Then I remembered the

90 Anne Marie Moulin

Hippocratic descriptions of 'crisis' and pneumonia. I had studied medicine and philosophy concurrently. During my residency, I was teaching philosophy for a day and a half each week, flitting back and forth from the ward to the classroom. For many years, I had often heard of Hippocrates as a distant forefather. On the one hand, philosophically speaking, he was the foundation - cited even by Plato - of the giant edifice that sought to portray Western science as a flight from magic and religion. On the other hand, medically speaking, Hippocrates and his signs pervaded our lessons in physical diagnosis: clubbing, succussion splash, and the famous gaunt facial expression, portent of death. In thinking of my dead patient, I was struck for the first time by the immediacy and veracity of Hippocrates' clinical wisdom. Long before the advent of antibiotics, the ancients followed signs of clinical progress. A good outcome could be expected when, on the ninth day, a drop in fever and clinical improvement was followed by profuse sweating and urination ('le debacle urinaire'). The patient would enter a new phase of the disease, called convalescence. If, however, the patient's organic resistance were overwhelmed and that ninth-day decline in fever occurred without profuse urination, then the patient was doomed. Since the advent of antibiotics in the 1940s, the usual course of pneumonia has been shortened, and the convalescent phase is now less distinct and largely unknown. That fateful night, I had been sitting with a man who seemed strong enough to recover. Unbeknownst to me, however, he was at an ancient crossroads, the crisis of the ninth day; already it was too late. Not long after, sensitized by this historical insight, I heard of a similar case of an English woman who did not enter hospital because her pneumonia was misdiagnosed as 'flu'; she too died on the ninth day. The Hippocratic doctors might not have been able to prevent these two deaths; unlike me and my colleagues, however, they would not have been surprised. And they might have kept vigil so that the passing of a fellow human being would not have been unnoticed and lonely. These historical considerations somewhat soothed my anxiety and alleviated my own sense of my guilt. By waiting so long, the man had placed himself beyond the power of medications to save him; he could share some of the blame. Had my historical insight about crisis come sooner, however, I might have transferred him to a different hospital with an intensive care unit, where the signs of distress would have been noted and quickly treated. Because of this tragedy, our hospital soon allocated a few beds to intensive care.

'La Crise' 91 The death also made me ponder the meaning of 'crisis' and its potentially beneficial effects on the algorithm of the immune system as it copes with pathogens. The ancient observers were astute. Today pneumonia mortality has not been eliminated by newer drugs. Early in the illness, antibiotics act as an additional help, but it is the healthy immune system that clears the infection with its inflammatory response and an orchestra of lymphokines - at least, that is the interpretation of modern immunologists. Advanced cases of pneumonia are always dangerous. Newer strategies for curing the 'captain of death/ as William Osier (1901, 108) called it following John Bunyan, are aimed at stimulating the immune system rather than killing bacteria. A last word. The day after my patient's death, his widow came to the hospital, pleading to talk with me. I was curious to meet this woman whom the man had vilified. Through her tears, she asked whether he had ever mentioned her name. I replied that he spoke of her often in his final hours, and with regret and affection. Was this lie what the ethicists would call 'pious'? And what would Hippocrates have said? BIBLIOGRAPHY Hippocrates. 1839-61. Oeuvres completes (10 vols.). E. Littre (ed.). Vol. 2: 'Epidemies, I' (1840), 598-717, esp. 681; vol. 9: 'Crises/ 274-95; 'Jours critiques' (1861), 296-307. Paris: Bailliere. Osier, William. 1901. Principles and Practice of Medicine, 4th ed. New York: Appleton.

Floating Kidneys SANDRA W. MOSS

In the 1990s, I worked in the employee health office of a community hospital in New Jersey. The capable nurse did most of the work and was not particularly dazzled by physicians. Most of the pre-employment examinations, annual physicals, and 'clearance' visits were routine. There were the usual sniffles and back strains and latex glove sensitivities and tuberculin skin tests to be read, and the increasingly ominous needle sticks with their attendant protocols. I even did some good. Did the hard-working medical records technician have repetitive strain injury from pressing a hole puncher all day? Yes; she improved when the department bought an electric hole-puncher. How did the rather sullen morgue attendant manage to record a lethal reading on his formalin badge? A walk through his routine showed that he more or less parked the badge on a shelf next to bottles of chemicals. Should the sad-faced, immigrant engineer, who had finally won a technical job making protective shields in the radiation therapy department, be allowed to work with molten 'Lipowitz metal' in light of his abnormal liver tests? The long answer was long, but the short answer was 'no.' The routine paperwork and seemingly routine patients sometimes told exceptional stories. A septuagenarian laundryman, one of the best workers in the hospital, listed malaria among his past illnesses; he had spent the war as a guerrilla in a mountainous area of the Philippines. Now, with advanced prostate cancer, he was going home to his birthplace to end his days. A mid-level medical technician, an older man from Eastern Europe, seemed to have a rather sophisticated medical vocabulary; he told me that he had been a physician decades ago in his own country. Was I was right or wrong to address him as 'doctor' for the rest of the visit, for it brought tears to his eyes? A religious sister,

Floating Kidneys 93 well known for her feisty personality and rollicking humor, showed up in the office with a hand puppet in the form of a nun with boxing gloves. I suspect she had been something of a trial to her superiors during her formative years, although she did a great job counseling oncology patients. I hope she took the puppet on rounds! And then there was the merely droll: a law student from Ulan-Bator observed that back home in Outer Mongolia, people were closely following the O.J. Simpson trial on television. My history of medicine moment came in the everyday form of a middle-aged, American-born woman. In the course of examining her, I discovered a generous, well-healed flank incision. Her history form said nothing about such surgery, and I asked her about the scar. As it happened, she had quite forgotten the operation, performed decades earlier in our hospital. She had undergone a repair of her floating kidney. Wow! For some time, I had been researching just that topic; I knew that the diagnosis of floating kidney had been wildly popular until it sort of faded away in the 1950s and that procedures to correct the defect had occupied the time and creative efforts of generations of surgeons. Most reports by enthusiastic operators had stressed the relief of symptoms and the happiness of the patients. So, of course, my next question was, 'Did the surgery help?' Indeed it had; she had been completely satisfied and her symptoms had been relieved. In recent decades, the diagnosis of floating kidney, or nephroptosis (from 'nephro' for kidney and 'ptosis,' which means falling), has virtually disappeared. It is well known that normal kidneys descend a few centimeters when a person stands up, but even marked excursions are generally of no clinical consequence and scarcely, if ever, cause symptoms (figure 13). The operation to 'fix' a floating kidney, technically known as nephropexy, is rarely performed today. I had completed a fellowship in kidney disease back in the late 1970s, but opted for a career in primary care. My interest in the history of kidney disease was triggered by an article by Willem Kolff, one of the first physicians to attempt hemodialysis for the treatment of acute kidney failure. Kolff was a Dutch doctor who assembled cellophane tubing, slats of wood, and Ford motors to build dialysis machines in occupied Holland during the Second World War. He lost seventeen patients before saving his first shortly after the end of the war. Kolff made much of the fact that the woman whom he saved had been a Nazi collaborator (with a seemingly unpleasant personality) who had little

94 Sandra W. Moss

13 Drawing by Johns Hopkins's artist Max Brodel showing the position of palpable (I), moveable (II), and floating (III) kidneys (Kelly, 1908, 583).

reason to expect compassion from her Dutch countrymen (Kolff, 1965). I thought about Kolff's tale a lot over the years. On a few occasions, I cared for patients whose political or social views were obnoxious. They probably hadn't liked me much either. But all physicians have such experiences. The system works because doctors and hospital personnel are conditioned, in fact required, to leave that baggage at the door. So how did I get to floating kidneys? In 1988, I was offered the opportunity to write short historical vignettes for a dialysis journal. As I

Floating Kidneys 95

dug further in pursuit of my quota of two or three vignettes per issue, I found that the earliest dialysis doctors were just plain tired of watching people die of acute kidney failure. An unknown wit once remarked that 'the dumbest kidney is smarter than the smartest doctor/ But these new dialysis doctors knew enough about physiology to imagine that they could build a Rube Goldberg apparatus and teach it to think like a kidney - at least close enough to pull patients through a critical period until their own kidneys kicked in. Those were heady days, uncomplicated by close oversight of clinical experimentation. I had met some of the first dialysis doctors in New Jersey in the course of my training, and I enjoyed their wonderful stories. One doctor had secretly wheeled anesthetized dogs into his hospital so he could try out the new dialysis machine. Another was accused of trying to bankrupt his hospital by running a single dialysis machine. 'Every dialysis/ recalled a third, 'was an experiment' (Moss, 1991, 555). So I wrote an article for our state medical journal about early dialysis days in New Jersey. Along the way, I met a remarkable woman who had come safely through a medical minefield. She lived in another area of the state and was never my patient in the usual sense; but my story about her was published, so in that sense, she became 'mine.' When her kidneys failed permanently in the mid-1960s, she survived for three years on peritoneal (abdominal) dialysis supervised by an innovative physician from Jersey City; the procedure would not become routine for another two decades. The treatments were done in her converted garage by a team of volunteers; the Knights of Columbus pitched in. When her abdomen could take no more, her husband learned to operate a hemodialysis machine at home, another new technique, which had not been available when she first fell ill and was, even then, limited to a few motivated patients who were in reasonably good shape. Eight years later, as accessibility to dialysis widened, she won a spot at a hospital dialysis unit. Fifteen years after her kidneys failed, she went on a transplant list, where she remained for several months. Because of what she interpreted as divine guidance, she canceled a scheduled vacation; the next day a matching kidney became available and she underwent a successful transplant. Some years later, she served me quiche in her home and told me her story. Very rarely, one meets a patient who somehow managed to stay ahead of the curve time and again. The early dialysis nurses were as bold as the physicians; to my surprise, one showed up in my employee health office. The former

96 Sandra W. Moss

nurse now worked in the pastoral care department visiting patients and talking to families and staff. Over the years, we became better acquainted and she recounted her early experiences in the dialysis unit of a hospital in northern New Jersey. All the while, I kept looking for new historical tidbits about kidneys for the journal. I was running out of 'early-days-of-dialysis' stories. Somewhere along the line, maybe while browsing, I recalled the entity known as floating kidneys and an associated condition called Dietl's crisis. I can't recall where I had first heard of the disorder - perhaps in medical school back in the late 1960s or maybe in the old textbooks that I thumbed through in search of fodder for the vignette mill. So ... what ever happened to floating kidneys? And who was Dietl? And what was his crisis? When I was in medical school, no one in the world knew more about things that can go wrong in the abdomen than Sir Zachary Cope, the venerable author of endless editions of The Early Diagnosis of the Acute Abdomen, first published in 1921. 'Acute abdomen' is medical shorthand for sudden abdominal pain that might or might not be a surgical emergency. Sir Zachary told generations of young physicians how to sort it all out. The 1968 thirteenth edition was still on my shelf in 1990. And there it was - right on page 68: 'movable kidney' (another term for floating kidney) with the added bonus, 'Dietl's crisis.' Cope used the term 'Dietl's crisis' to refer to the pain experienced by a patient as a result of sudden blockage of the ureter, the tube leading from the kidney to the bladder. It might occur as a result of kinking as a floating kidney floated downward, said Sir Zachary. I'd never actually diagnosed a case of floating kidney, but in retrospect, maybe I had witnessed a Dietl's crisis during my early career. A middle-aged lady had intermittent episodes of excruciating flank and abdominal pain recurring roughly hourly for a day. The pain was the typical colicky pain associated with kidney stones. Those who have experienced both swear that it is worse than the pain of active labor; big strong men, having never experienced labor, just writhe about and moan. My patient did indeed have a kidney stone - a huge one that was stuck up in the kidney and acting like a ball valve, intermittently blocking the ureter, and causing the severe pain. I guess that was a Dietl's crisis or as close to one as I was likely to see. The urologist was not a man to dally over historical conundrums; he took the patient to the operating room and put an end to the stone and the (maybe) Dietl's crisis.

Floating Kidneys 97 My very first computer-guided search was a request for all articles on floating kidneys. The hospital librarian, like a kindly kindergarten teacher, walked me through it. I found out a lot from that search. First, floating kidneys had never really gone away; they were alive and well in Europe, particularly in the Soviet Union, where surgeons were still reporting their experience with scores of patients. Second, floating kidneys had a rich literature. There were hundreds of published articles in many languages dating back over a century. A chemist friend slogged through a ponderous German article for me. A cardiology technician helped me with Russian articles. A pathologist, in whose laboratory I had demonstrated my complete inability to thread tiny tubes into tiny blood vessels in tiny mice, translated a Japanese article for me. As I followed the trail of references and poured through old textbooks, I found out something else: floating kidneys and the operations to fix them seem to have swung in and out of favor over the decades. Many authors used the image of a pendulum to describe successive waves of popularity and disapproval; but the metaphorical pendulum was in a constant state of gravitational chaos. I preferred to think that floating kidneys ricocheted around the medical literature. I pestered the urologists in the doctor's lounge and hospital clinic to tell me what they knew about floating kidneys. Some had never heard of the diagnosis. A young doctor told me a friend of his had thrown together an essay overnight on the subject for which he won some sort of prize; my project was taking years! A middle-aged urologist, somewhat of a cynic, was of the opinion that urologists stopped operating on floating kidneys because insurance companies stopped paying for it. An older urologist recalled his early days in practice when surgery for floating kidney was quite routine. He hadn't operated on a floating kidney in over thirty years. His recollection was that his patients had been well pleased with the results. In the 1898 edition of his famous textbook of medicine, William Osier, the master clinician of his day, reported finding floating kidneys in over 700 patients. When the movable kidney is firmly grasped through the abdominal wall by the examining physician, said Osier, 'there is a dull pain or sometimes a sickening sensation' (Osier, 1898, 847). I never tried that on a patient. Osier believed that compression of the lower thorax by tight lacing and poor muscle tone after childbirth contributed to the problem. In succeeding decades, surgeons cited such predisposing conditions as spinal abnormalities, deficient fat around the kidneys, and traction from a chronically 'overloaded' colon.

98 Sandra W. Moss Women outnumbered men ten to one, and the right kidney seemed to float more than the left. Although most patients were middle-aged, a St Louis surgeon wrote in 1946 that he had observed the condition in 'elderly people who have literally dragged their sagging kidneys through a decade or more' (Burford, 1946, 221). Floating kidneys were blamed for impaired kidney function, infection, kidney stones, and high blood pressure. Ptosis was not confined to the kidneys. Frantz Glenard, a French physician, described ptosis of all the abdominal organs, including the intestines, stomach, and liver. Most women with floating kidneys had no symptoms; others experienced a dull or dragging pain in the flank or abdomen, along with urinary and gastrointestinal symptoms. The most spectacular symptom was that acute painful episode originally described in 1864 by Josef Dietl, a Polish physician who was a minor light in the great medical school in Vienna. The Poles still remember him as an influential professor and a nationalist. A Polish friend, who helped me by translating a biography of Dietl, sent along a photograph of her young son standing in front of Dietl's statue in Krakow. I had spent so many months immersed in the strange world of forgotten disease and forgotten doctors that I welcomed this small link to the present. Dietl's crisis, alas, has almost disappeared from the books in recent decades, a victim of the general decline of eponyms and the uneven fortunes of floating kidneys. Over the decades, nonsurgical therapies for floating kidneys included bed rest, laxatives, massage, gymnastics, strengthening exercises, fattening diets, and a wide assortment of corsets, the latter often donned in the recumbent position as the patient lifted her pelvis off the bed (figure 14 a, b). One surgeon wrote, somewhat cynically, in 1946: 'We prefer having many patients try a non-elastic abdominal girdle for a time, for they will be better pleased with their surgical results after this trial' (Burford, 1946, 222). The big dilemma, endlessly debated for over a century, centered on the question of which women needed surgery to reposition the kidney. The answers ranged from 'none' to 'almost all.' Operations for suspending a floating kidney date back to the 1880s. No less than 170 operative procedures for nephropexy were developed over the decades, with each surgeon adding his particular modification, and usually his name. Most commonly, the errant kidney or a portion of its capsule was tacked up to the muscles of the back. Rarely, a surgeon would experiment with tissue adhesives, gluing the kidney in place. Claude Deming of Yale, a prominent surgeon, was critical of techniques

Floating Kidneys 99

14a A corset for correcting floating kidneys. Ramon Guiteras, Urology: The Diseases of the Urinary Tract in Men and Women (New York: D. Appleton and Co., 1912, 416).

14b Another illustration of the recommended method for applying the corset (White et alv 1917, 592).

100 Sandra W. Moss

A

B

15 Two nephropexy operations (ca. 1912) using (A) a flap of kidney capsule, or (B) a tunnel through the capsule, to fix the kidney to the twelfth rib (Israel and Israel, 1925, 67).

in which 'already unhappy' kidneys were 'cut [and] slashed.' He developed an operation for gently cradling the kidney in a shelf fashioned from nearby tissue (Deming, 1930, 251). Bold operators invented flamboyant procedures for slinging the kidney from the twelfth rib or even impaling its capsule on a rib (figure 15). Results published in medical journals were generally excellent and complications seemed rare. One surgeon commented vaguely that his results were 'uniformly gratifying/ Somewhere along the line, an anonymous wag commented that 'the most serious complication of nephroptosis is nephropexy' (Mayor and Zingg, 1978, 32). Nephroptosis was often associated with nervous exhaustion, called neurasthenia. Fashionable among elite physicians and sophisticated patients at the turn of the twentieth century, neurasthenia was characterized by an encyclopedic array of physical and emotional symptoms. In 1910, William Mayo joined in a panel discussion on the topic of movable kidneys and neurasthenia. He opposed operating on neurasthenics with ptosis because 'these patients are wrong from the beginning.' A Boston surgeon added that 'neurasthenic symptoms reappeared just the same as soon as the glamour of the operation was lost and the

Floating Kidneys 101

patient had returned to the humdrum of home from the professional atmosphere of the operating room and clinic' (Kelly, 1910, 519-20). Most physicians agreed that women with nephroptosis were not quite 'right/ forgetting that it had been physicians, not patients, who 'discovered' both neurasthenia and nephroptosis. In 1895, a British surgeon reflected that 'if one could draw the patient's thoughts from her kidney it would often be unnecessary to operate' (cited in Riches, 1970). Osier added: 'The mental kidney, more often than the abdominal, is the one that floats' (Bean, 1951,136). A Birmingham surgeon who had operated on no less than 2000 kidneys in 1500 patients, wrote: 'They were the neurotic flotsam and jetsam who are the despair of their friends and medical attendants' (Billington, 1928). Some physicians saw only flawed people rather than a flawed diagnosis and misguided treatment. A harsh and slightly hostile view persisted in some quarters. One urologist observed in 1987 that patients with symptomatic ptosis are usually 'neurovegetative labile female patients with vague abdominal symptoms and somewhat hypochondriacal' (Sokeland, 1989,160). Did I ever meet a 'neurovegetative labile female' patient? On reflection, maybe I was a 'neurovegetative labile female' doctor, especially at the end of a long night on call. Floating kidneys always sailed upon stormy seas, and the rhetoric was often correspondingly salty. Passions ran high! The debate raged loudly at a meeting of the American Medical Association in 1929. In response to a paper reporting the successful results of surgery, William Braasch of the Mayo Clinic, a critic of nephropexy, expressed the hope that his listeners would not be inclined to 'promiscuous nephropexy in every patient who is found to have a floating kidney.' A doctor in the audience retorted, 'Dr. Braasch believes that we will get into an orgy of fixation of kidneys' (O'Conor, 1929,1116-17). Nearly two decades later, Braasch observed wryly that a 'listless meeting of urologists can be suddenly animated by the simple word "nephropexy."' (Braasch, Greene, and Goyanna, 1948, 399). Modern physicians who have seen tens of thousands of patients without diagnosing a single floating kidney have to wonder what was really wrong with all those women. For the most part, patients with flank or abdominal pain have been reclassified, with diagnoses ranging from gall bladder disease to backache. Some fall into vague categories of 'functional pain' or 'somatization disorder/ which means that the doctor acknowledges the pain but can't find a specific cause. The vast majority of general physicians and kidney specialists don't include

102 Sandra W. Moss floating kidneys in their diagnostic rubrics. No patient of mine was ever released from the emergency room with the diagnosis and recommendations of 'Dietl's crisis due to floating kidney - apply girdle and follow up with family physician in the a.m.' In 1984, two Scottish surgeons concluded, 'In common with other ineffective treatments for imaginary diseases, operations for the movable kidney simply faded away in Britain in the 1930s' (McWhinnie and Hamilton, 1984, 847). But, as Mark Twain said in his 1897 cable from London, 'Reports of my death are greatly exaggerated' - floating kidneys keep resurfacing, as it were. No modern urologist has hundreds of cases, but some have one or two. Today, a few British and American surgeons are cautiously performing kidney suspensions for the very occasional patient with a diagnosis of floating kidney; the new wrinkle is at the cutting edge of technology: laparoscopic surgery. Benjamin Barnes, a professor of surgery, wrote an article in 1977 about discarded operations. Nephropexy was one example; another procedure, immensely popular in England a century ago, was surgery for constipation. Barnes stressed that he intended no 'adverse criticism' of a previous generation of physicians: 'Surgeons caring for patients ninety years ago exercised their skills in a different environment' (1977, 110). Despite the occasional dash of misogyny, status building, overweening self-confidence, and professional arrogance that emerge from the older medical writings about floating kidneys, most surgeons had a sincere interest in relieving what they and their patients perceived as suffering; they believed they were offering the best, up-to-the-minute treatment. The key problem, according to Barnes, was that controlled clinical trials and blueprints for experimental protocols were not yet part of the vocabulary of clinical research; established dogma consecrated by past masters and the pronouncements of 'leading men' in the field carried much greater authority than they do today. Influential surgeons enjoyed virtually unlimited autonomy, trying out experimental operations with little or no oversight or review. It was assumed that proper ethical constraints were more or less incorporated within the medical degree and polished by professional advancement (Barnes, 1977,110-11). And patients, then as now, also played a role in perpetuating fads, especially if the fad had a certain cachet in fashionable circles. Floating kidneys were well known to the educated medical consumer in the past. Robert Hudson, a medical historian, commented on the 'symbiotic relationship between physicians and patients where faddism in medi-

Floating Kidneys 103

cine is concerned/ a situation familiar to the harried practitioner who finds herself bombarded by patients demanding prescriptions or referrals for therapies of the moment (1989, 393). When I came across an article in the local newspaper, dated 1948, describing 'gastroptosis' or 'sagging stomach/ I wondered how many readers, relieved that their chronic dyspepsia had a medical explanation, clipped the article for showing to their doctor. Like most physicians, I tried, with indifferent success, to keep up with the popular press on medical 'breakthroughs/ In truth, I found that the little reading 'assignments' brought in by patients often proved to be quite valuable, either as a talking point at the next visit or as a reasonable option for treatment. I also figured that I should try to sound as au courant as the teenaged clerk in the health food store, applying his knowledge and experience to unproven and potentially dangerous 'diet supplements/ I kept a file with properly researched medical information on the newest fads. When a young lady asked me about blue cohosh, a problematic herbal used for 'female conditions/ I was ready! But blue cohosh was a lot safer than the 'Ephedra' a minimally obese student with alarmingly high blood pressure was taking for weight loss; I was ready there too, but she wasn't convinced and never came back. And what of 'my' nephropexy lady - the one who came to the employee health office - my one and only close encounter with a floating kidney? The legions of old-fashioned nephropexy patients have largely passed from the scene, their diagnosis forgotten, their operation discarded. I am glad I had the opportunity to meet one of them. She had pain - maybe even Dietl's crisis. A good urologist diagnosed a floating kidney. So she underwent nephropexy. She felt better and lived a long and healthy life. Who knows? BIBLIOGRAPHY Barnes, Benjamin A. 1977. Discarded operations: surgical innovation by trial and error. In John P. Bunker, Benjamin A. Barnes, and Frederick Mosteller (eds.), Costs, Risks, and Benefits of Surgery. New York: Oxford University Press, 109-23. Bean, William Bennett (ed.). 1951. William Osier: Aphorisms from His Bedside Teachings. Springfield: Charles C. Thomas. Billington, William. 1928. The therapeutic value of nephropexy. British Medical Journal, 2: 977. Braasch, William F, Laurence F. Greene, and Ruy Goyanna. 1948. Renal ptosis

104 Sandra W. Moss and its treatment. Journal of the American Medical Association (JAMA), 138: 399^03. Burford, C.E. 1946. Nephroptosis with co-existing lesions. Journal of Urology, 55: 22(M. Cope, Zachary. 1979. Cope's Early Diagnosis of the Acute Abdomen, 15th ed William Sillen (ed.). New York: Oxford University Press. Deming, Claude Leroy. 1930. Nephroptosis: causes, relation to other viscera and correction by a new operation. Journal of the American Medical Association (JAMA), 95: 251-7. Guiteras, Ramon. 1912. Urology: The Diseases of the Urinary Tract in Men and Women. New York: D. Appleton and Co., 1912. Hudson, Robert P. 1989. Theory and therapy: ptosis, stasis, and autointoxication. Bulletin of the History of Medicine 63: 392^13. Israel, James, and Wilhelm Israel. 1925. Chirurgie der Niere und des Harnleiter Leipzig: George Thieme, 1925. Kelly, Howard A. 1908. Medical Gynecology. New York: D. Appleton and Company. - 1910. Movable kidney and neurasthenia.Transactions of the American Surgical Association, 28: 513-24. Kolff, Willem J. 1965. First clinical experience with the artificial kidney. Annals of Internal Medicine, 62: 608-19. Mayor, Georges, and Ernst J. Zingg. 1978. Urologic Surgery: Diagnosis, Techniques, and Postoperative Treatment. New York: John Wiley and Sons. McWhinnie, Douglas L., and David N.H. Hamilton. 1984. The rise and fall of surgery for the 'floating' kidney. British Medical Journal, 288: 845-7. Moss, Sandra W. 1991. Dialysis pioneers of New Jersey. New Jersey Medicine 88: 555-60. Murphy, Leonard J.T. 1972. The History of Urology. Springfield, IL: Charles C. Thomas. O'Conor, Vincent J. 1929. Value of nephrolysis, ureterolysis and nephropexy in selected patients. Journal of the American Medical Association (JAMA), 93: 1114-17. Osier, William. 1898.The Principles and Practice of Medicine.New York: D. Appleton and Company. Riches, Eric. 1970. Annual oration on the development of renal surgery. Transactions of the Medical Society of London, 86: 202. Sokeland, Jurgen. 1989.Urology, 2nd revised English edition, Claus Rohrborn (tr.). New York and Stuttgart: Thieme Medical Publishers. White, J.W., B.A. White, S.W. Moorehead, and E. Martin, ca. 1917. White and Martin's Genito-Urinary Surgery and Venereal Diseases, 10th ed. Philadelphia: Lippincott.

Historical Adventures in the Newborn

Nursery: Forgotten Stories and Syndromes JEFFREY P. BAKER

One of the more depressing moments during my career as a pediatrician and medical historian came during a conversation in which I was trying to convince one of the medical school deans of the utility of history. 'The basic problem with history/ he announced with a dismissive sweep of the hand, 'is that it's retrospective.' His point was true enough in one sense. For most physicians, history brings to mind lists of names and dates, arranged in neat timelines culminating in the present. This style of history is fundamentally apologetic; its purpose is to confirm, not challenge, the authority of present knowledge. In contrast, virtually all professional medical historians see their task as one of writing contextualized history; they work earnestly to understand the past on its own terms. This type of history has great utility for understanding many of the fundamental questions regarding health care today - for example, how social factors such as race, class, and gender shape how diseases are defined and treated. Nonetheless, the relevance of the past is less than obvious for the busy practitioner in the clinic, muttering curses about insurance companies and rarely arriving home in time to read a book about anything, much less history. Here arises the dilemma of the clinician-historian. Like a traveler who has spent years in another land, the physician who returns to the clinic following a prolonged engagement with the past may indeed claim new insights, but (like Odysseus) cannot assume a receptive audience. For me, historical research is a journey. After completing my residency in pediatrics in 1988, I pursued graduate training in medical history while holding a fellowship in ambulatory pediatrics. My dissertation concerned the history of neonatal technology. It arose as a direct response to my clinical experience. I did not become a neonatologist,

106 Jeffrey P. Baker

but I had spent a great proportion of my training in the intensive care nursery. This discipline was a hotbed of controversy in the 1980s in the wake of the much-publicized 'Baby Doe' case: in 1982, an infant with Down syndrome was allowed to die after the parents refused surgical repair of an intestinal obstruction. The Reagan administration responded with a series of regulations designed to prevent hospitals from selectively withholding treatment of handicapped and premature newborns - going so far as to provide a 'hotline' phone number by which nursery staff members could anonymously report such cases. Recalling the Karen Ann Quinlan case of a few years earlier, 'Baby Doe' generated tremendous media publicity regarding the appropriate treatment of premature and congenitally handicapped newborns. Though I was impressed that many of my attending physicians were indeed honestly wrestling with these difficult decisions, I was also struck by how often the medical team wielding its technology seemed to relegate families to a peripheral role in the care of their own infants. I could not help but wonder about the historical background to this story, and about the larger question of how the responsibility for determining the treatment of critically ill newborns had shifted from families to doctors. Had mothers lost control largely as a consequence of technology? Or were other historical forces more relevant? The idea for my research project germinated just at the close of my chief residency, while I was attending the centennial meeting of the American Pediatric Society in 1988. Dr William Silverman, a respected neonatologist and serious student of history and ethics in his own right, gave an eloquent, historical address titled 'Neonatal Pediatrics at the Century Mark' (Silverman, 1989). He told a fascinating story of how French obstetricians in the 1880s found that the simple act of keeping a premature infant warm can have a tremendous impact on its survival. Their insight led to the adaptation of chicken incubators for the rearing of premature infants, marking the first moment when physicians became seriously invested in their care. Various innovators steadily refined the device, incorporating thermostats and ventilation systems, and ultimately transforming it into a relatively formidable technology for its day. Most remarkably, by the early 1900s, so-called 'incubator baby shows/ complete with live infants, became commonplace in world fairs and amusement parks. The technology thus appeared on the radar screen of popular culture, raising difficult questions of whether so much energy ought to be expended for these fragile creatures. Silverman's talk fascinated me, for I had always assumed neonatal medicine to have been a recent phenomenon, at best no more than a

Historical Adventures in the Newborn Nursery 107 quarter of a century old. Doubtless my many nights in the intensive care nursery, consumed by the management of tiny babies on mechanical ventilators, had made it difficult for me to appreciate the significance of the humble incubator. Indeed, in residency we called the incubator babies the 'feeders and growers/ and gave them relatively little thought unless the nurse called. It was hard to imagine that the incubator had once been perceived as a 'high tech' intervention, the first great symbol of the potential of science to save the lives of premature newborns. I decided to examine the first fifty years of neonatal care that followed the invention of the incubator in 1880, to search for parallels with the present and perhaps a better understanding of how the mothers, as well as doctors, shaped the use of this technology. I spent over five years developing this story into a book, all the while juggling clinical work (Baker, 1996). Has it made a difference in how I practice as a physician? My answer to this question will proceed on two levels: first, the broader level of my identity and ethical framework as a physician; and second, the more concrete level of whether I actually manage patients differently. History, Ethics, and Physician Identity My historical research has transformed my self-identity. Like many residents, I came to think of myself increasingly as a specialist (in my case as a pediatrician) rather than simply as a doctor. I am indeed proud of my specialty, particularly of its tradition of advocacy on behalf of disadvantaged children around the globe. But I have also come to see how such pride can border upon parochialism. I returned from my historical journey with a different understanding of my professional relationship to other health care workers. For example, I came to relate to obstetricians differently. Previously I had never questioned that pediatricians were the 'natural' caregivers for newborns. Much to my surprise, however, I learned that obstetricians were the first to develop incubators and the first nurseries for premature infants. Their prominence reflected the fact that the line between pediatrics and obstetrics at the turn of the century was still relatively blurred. Particularly in France, many of the leading figures who promoted efforts to reduce infant mortality were obstetricians. They tended to see their task as one of reforming motherhood rather than simply providing clean milk. Many actively cared for newborns in the hospital and continued to follow infants as long as they were breastfed. The French obstetrician and 'father of neonatology,' Pierre Budin,

108 Jeffrey P. Baker

for example, tried to follow all of his premature baby hospital 'graduates' in outpatient clinics known as consultations des nourissons (consulations for nurslings). Thus, obstetricians were the pioneers of neonatal medicine. One of the great 'what ifs' raised by my study was how neonatology might have evolved had it remained within obstetrics. Early twentiethcentury pediatricians, of course, portrayed their entry to the nursery as more or less inevitable, as obstetricians found the care of the mother increasingly complex and consuming. That may be true enough; yet, I am struck that specialization has not taken place without cost. In many ways an artificial line has been drawn between mother and baby, not to mention between fetus and newborn, that complicates both communication and medical care. I have come to see that the fragmentation of perinatal medicine, between obstetrics and pediatrics, generates just as many ethical dilemmas for the modern intensive care nursery as the life-sustaining technologies. Traditionally it has been the obstetrician, not the pediatrician or neonatologist, who decided how to treat a critically ill newborn. Dr William Silverman described how this took place during his own residency training in New York City in 1945: Tre-viable' and severely malformed newborns were placed in a cold corner of the delivery room and allowed to die. The decision was made by the obstetrician, who knew the family, knew the parents' circumstances, and often knew the parents' wishes. There was little or no discussion of the dark drama by the few other attendants in the delivery room ... The outcome of the delivery was reported as 'stillborn.' (Silverman, 1992, 972)

Here was an answer to how a 'Baby Doe' was treated in the 1940s. It is not a pleasant scene to envision, and we may certainly be thankful that far fewer babies today face the dismal prognosis of a 620-gram premature baby in 1945. Yet, parents and physicians do continue to face difficult decisions regarding babies of borderline viability, and nearly always they must do so as strangers to one another. Even if a mother today is fortunate enough to have an obstetrician whom she knows well, that relationship is severed at the moment of birth. The family is left to make agonizing decisions while developing a brand-new alliance with an unknown team of physicians. My point in using this example is not so much to decry specialization, but to suggest that historical awareness can at least counter the parochial perspective that so frequently accompanies it. Good history should

Historical Adventures in the Newborn Nursery 109

lead us to redefine the boxes into which we try to fit the world's complexity. In medicine, this involves transcending not only the lines dividing specialties, but the still more profound barriers separating doctors from other health care workers, and indeed from patients. One can talk about all of these issues in the abstract, but they tend to be easier to grasp using stories. For example, my pediatric interns seem to complain interminably about how their obstetric counterparts never communicate with them. Yet, they are often equally guilty of taking their information from the chart or computer record rather than actually talking with the mother or her obstetrician. I try to remind them that, while obstetricians certainly face a temptation to neglect the newborn, we frequently commit the opposite vice of neglecting the mother. To make the point, I like to tell my residents why east coast institutions such as Johns Hopkins Hospital did not lead the way in early premature infant care. In the case of Hopkins, the answer surely involves the fact that J. Whitridge Williams ran the nursery. Williams was the leading obstetrician of his time, and by all accounts a civilized and affable man; however, he held great reservations about saving what he called 'weakly' newborns. Small, premature babies appear to have been given little aggressive care under his management, and deaths among such infants within the first two weeks of life were commonly written off as 'stillbirths.' This story, admittedly simplified, confirms the stereotype of the fatalistic obstetrician with respect to the newborn, and plays well with the housestaff. Then I ask them if they know why breastfeeding declined. I remind them here that obstetricians did at least encourage breast-feeding in the nursery; it was pediatricians, whose very specialty was largely based upon the promise of scientific infant feeding, who felt that they could improve upon nature. This wasn't because pediatricians were against breast-feeding; it reflected the fact that, in the early 1900s, they typically worked in children's hospitals where parents were unavailable. In their excitement to rescue newborns from the grip of therapeutic nihilism, pediatricians found it all too easy to leave out the mother (Baker, 2000, 325). At this point I throw in the zinger: 'Have you spoken today with this baby's mother?' The point has been made. History and Clinical Practice Thus far, I have evaded the second and more concrete question of whether history has true practical value. Has my historical research shaped not only the framework in which I make clinical decisions, but

110 Jeffrey P. Baker

actually influenced those decisions? I could certainly reply that I emerged from all of my study of the incubator much more aware of the vulnerability of even relatively mature infants born of thirty-five to thirtyseven weeks' gestation to the complications of hypothermia. Our hospital intensive care nursery is so crowded with 'micropremies' that it is not uncommon to have small 2000-gram babies on the 'mother-baby' unit for full-term babies. If discharged within forty-eight hours, some of these will appear, at their first visit, to be cold, dehydrated, and lethargic. This situation can easily trigger readmission and an investigation for neonatal sepsis, to the mortification of the parents. In the nursery, I am thus constantly fighting the tendency to treat mildly premature babies as if they were term. I see them through the lens of how they appeared in 1900. For example, I teach the parents to bundle their babies well and check their temperatures following discharge, especially if the infant is not feeding well. If the temperature is a little low and baby doesn't appear overtly ill, I give them the same advice that could have appeared in a medical article in 1885: put the baby and mother in bed with one another, skin-to-skin. (Of course, if this doesn't work, we are in trouble.) My strangest adventure involving the temperatures of neonates, however, was my rediscovery of a clinical entity of which I had never heard - indeed, one whose management in the early 1900s ran counter to everything I had been taught. I think it is an example that bears more extensive retelling, for it brings up the dilemmas raised when one tries to take historical writers seriously, even when their testimony contradicts standards of practice today. The entity in question was the once well-known (though now almost totally forgotten) phenomenon known as inanition fever of the newborn. Fever in the newborn is a serious issue. As every senior medical student knows, it raises the possibility of overwhelming and quite possibly fatal infection from neonatal sepsis. Rare is the night on a busy pediatric service without an admission for 'rule out sepsis' occasioned by a young infant presenting with unexplained fever. Such infants routinely undergo blood work, catheterized urine, lumbar puncture, and admission for observation on intravenous antibiotics for at least forty-eight hours. Though there has been increasing discussion over the past few years regarding the precise age beyond which one can begin to relax this set protocol of investigations and use clinical judgment alone, in general, the younger the infant, the more automatic the response. With this in mind, one may picture me soon after residency in gradu-

Historical Adventures in the Newborn Nursery 111

ate school browsing through Thomas Cone's History of American Pediatrics in the medical library, trying to get ideas for a research paper. Cone's work is an encyclopedic work of medical history that provides a paragraph on almost any topic, drawn from the author's life-long enthusiasm for pediatric history. My eyes stopped above one such entry with the heading 'inanition fever.' According to the brief account, during the early twentieth century, many pediatricians apparently shrugged off even high fevers in very young infants as a physiological consequence of dehydration or starvation (Cone, 1979, 190-2). Like any redblooded pediatrician fresh out of training, I quickly dismissed this idea as bizarre if not ludicrous. I turned the page and found another topic. But 'inanition' was a curious word, and it never quite left my head. That was in the autumn of 1988. Several years later, after I had completed my doctoral degree, a newborn had the misfortune to spike a fever while I was attending in the hospital. As the team proceeded to initiate the rule-out sepsis sequence, a veteran nurse (and strong advocate of breast-feeding) chortled at me, 'Don't you know he's just dehydrated?' It was true - the baby was breast-fed and had lost over 10 per cent of its birth weight. We still did the work-up, but her admonition stayed with me. Not too long afterwards, I saw a dehydrated, four-dayold in the clinic whose mother's breast milk had failed to appear. Once again the temperature was elevated. I think that it was at this point that the dim memory of that term 'inanition fever' began to translate into a conviction that it was time to go back to the library, not to the reference section, but to the history collection. I found Cone's book once again and the short description. This time it came across quite differently: now I recognized the author to whom Cone had attributed the term. It was none other than L. Emmett Holt, the most authoritative pediatric figure in the United States during the early twentieth century (Holt, 1895). In my earlier research, I had come to know Holt well as a careful and sober-minded individual, not given to casual remarks. He directed the New York Babies Hospital and wrote the most influential pediatric textbook of his day (Duffus and Holt, 1940). Infant hospitals of the time contended with institutional mortality rates approaching 50 per cent among patients under one year of life. Severe malnutrition accompanied by a vicious cycle of recurrent infection and further weight loss was the leading killer in these institutions (Baker, 1996, 136-7). 'Inanition' was a medical term reserved for the most acutely ill of such patients; from our current standpoint, it may have overlapped with dehydration as well as starvation.

112 Jeffrey P. Baker

A keen observer, Holt was well aware that fever in the first days of life could be the earliest warning of catastrophe. He nonetheless believed that the natural history of inanition fever was so characteristic that it could be reliably distinguished from infectious (or 'pyogenic') fevers. To cite the account given in the first edition of his textbook The Diseases of Infancy and Childhood, published in 1897, Holt asserted: Under this heading are included cases seen during the first five days of life - generally from the second to the fourth day - in which there is an elevation of temperature, apparently due to the fact that the infant gets very little, frequently nothing at all from the breast at which it is being suckled. It is further characteristic of these cases that the temperature falls when the milk is secreted in abundance, or when the child is put on a full breast, or when artificial feeding is begun. (Holt, 1897,118-19)

Inanition fever, as thus described, was relatively common in Holt's experience. Only a minority of mothers in his day gave birth in the hospital, but those who did often remained there with their infants for up to two weeks. Breast-feeding was the norm. Holt monitored the rectal temperatures of over 3000 newborns among the three New York City hospitals where he attended, finding fever over 101 degrees Fahrenheit in 10 to 26 per cent of the babies. The high prevalence of fever conceivably reflected the atmospheric conditions of hospitals prior to air conditioning. The fevers typically fell abruptly following supplementation and remained normal for the remainder of the hospital stay (Holt, 1897, 120). This pattern mirrored what we were seeing in our hospital (although far less often than in Holt's time). Though I knew that only a fraction of the many babies we admitted for sepsis evaluations were actually confirmed to have a serious bacterial infection, I had never given much thought to the cause of their fever. After reading Holt's description, however, I began to notice how many of these babies were breast-fed infants, three or four days old, who had lost over 10 per cent of their birth weight before the onset of maternal lactation. Why dehydration would cause fever was not obvious to me, though one could speculate that it might be mediated through hypernatremia (high sodium levels, present in many of these infants) or altered thermoregulation (control of heat) due to peripheral vasoconstriction. At any rate, the failure to identify the presence of dehydration and to focus exclusively on 'ruling out sepsis' had negative consequences for these infants. Some new-

Historical Adventures in the Newborn Nursery 113 borns were given antibiotics but no fluid, and continued febrile until the latter was provided. In other cases, no lactation consultant was involved, and the mother decided to discontinue breast-feeding. Almost all cases, particularly those involving re-hospitalization, were emotionally traumatic and physically exhausting for the families involved. Why had I never heard of inanition fever during my training? Following Holt's first case description, so much was written about the syndrome that it is difficult to conclude that it was rare. In 1922, another prominent pediatrician, H. Bakwin, noted that 'the frequent occurrence of a transient fever during the first few days of life is now generally recognized' (Bakwin, 1922, 508). Speculation over etiology shifted from malnutrition to dehydration, reflecting an emerging distinction between these two entities in pediatric science during the same time period. Nonetheless, between 1920 and 1950, inanition fever more or less vanished from professional awareness. Entries on inanition fever became ever shorter in successive editions of textbooks, vanishing altogether in new texts. One may speculate that the decline of breast-feeding was probably the most important factor behind this decline. Air conditioning doubtless helped to prevent dehydration as well. And finally, antibiotics appeared by the mid-century. The physician's task in evaluating fever became one of identifying and 'ruling out sepsis,' rather than determining the actual cause of the elevated temperature. Explaining the return of inanition fever in the 1990s is less straightforward. Breast-feeding had reemerged by this time, although this trend had been gaining momentum for over twenty years. Perhaps the routine supplementation of young breast-fed babies with formula or sugar water, a practice that appears to have been common in many nurseries in the 1970s, averted dehydration to some extent. For example, all breast-fed babies in one frequently cited 1970s study of newborn fever were supplemented (Voora et al, 1982). The decline of this practice, in itself a positive trend, may have proved deleterious in our case as early discharge became commonplace in the mid-1990s. It was at this time that we began to have babies return to the clinic, not at one week, but on the fourth day of life, exactly in the window when dehydration was most likely to present. The problem was probably further exacerbated by our lack of consistent support from a lactation consultant prior to discharge. One of my colleagues, John Moses, and I wrote up three of our cases complete with graphs illustrating the close relationship between dehydration and fever in our babies. The manuscript, which addressed the

114 Jeffrey P. Baker

history of inanition fever in its discussion, was never published. One journal dismissed it simply because it was a case report. Another asked for a prospective study. This was a perfectly valid request, but it seemed to us to represent the next step. We were trying to define a clinical entity, not its prevalence or management. A case report coupled with review of the literature seemed the best way to accomplish this task. Thinking of my former medical school dean who dismissed history for being 'retrospective/ I am struck that today's focus on quantitative and prospective studies has rendered problematic, not only medical history, but also case narratives. Unfortunately, my own clinical responsibilities changed at this point, as our general pediatric group ceased to cover the nursery on weekdays. I was unable to find a colleague to conduct a prospective study. And to some extent, improvements in support for breast-feeding mothers resulted in fewer complications of all sorts. Our nursery finally began to offer daily support from lactation consultants. Both lactation consultants and doctors also became more aware of the need to identify the minority of newborns at risk for dehydration. There had been some degree of resistance to this in the past because of the fear that it might lead to introducing bottles inappropriately, perhaps causing the baby to develop 'nipple confusion' and thereby lose interest in the breast. We introduced new means of supplementing infants, by cups or fingerfeeding with small feeding tubes, that satisfied doctors and lactation consultants alike. As a result we began to see fewer dehydrated babies in our nursery or follow-up clinics, with or without fever. My historical training has thus challenged how I think about the 'natural history' of the newborn. Not simply a matter of physiology, the natural history of the premature infant has changed over time depending upon the care available to these babies and the context in which they are raised. As much as we try to classify these ever-changing patterns into neat categories of normal and pathological, they continue to shift over and over again. Historical awareness can free us from our own limited perspective in space and time, and open our eyes to detecting (or in my case, rediscovering) new patterns of health and disease. It may not provide firm answers, but can be of great use in defining hypotheses and understanding diseases. Indeed, the common thread uniting all the examples in this account has been to call attention to the power of historical awareness as an antidote for medical parochialism. The most valuable role of history is not to commemorate one's own tradition, but to transcend that perspec-

Historical Adventures in the Newborn Nursery 115

tive and become open to others. One is reminded that Herodotus wrote about the Persians as well as the Greeks. The great challenge is to take historical testimony seriously when it runs against the grain of one's conventional wisdom. It is much easier to dip into history as a child sorts through her mixed vegetables, picking out the carrots and leaving the peas according to her likes and dislikes. Integrating the pieces that fail to please and console is more difficult, but ultimately it is what makes the historical enterprise worthwhile. BIBLIOGRAPHY Baker, leffrey P. 1996. The Machine in the Nursery: Incubator Technology and the Origins of Newborn Intensive Care. Baltimore: lohns Hopkins University Press. - 2000. The incubator and the medical discovery of the premature infant. Journal ofPerinatology, 5: 321-8. Bakwin, H. 1922. Dehydration fever in new-borns, II. American Journal of Diseases of Children, 24: 508-19. Cone, Thomas E. 1979. History of American Pediatrics. New York: Little, Brown. Duffus, R.L., and L.E. Holt, Ir. 1940. L. Emmett Holt: Pioneer of a Children's Century. New York: Appleton-Century. Holt, L Emmett. 1895. Inanition fever in the newly born. Archives of Pediatrics, 12: 561-5. - 1897. The Diseases of Infancy and Childhood. New York: D. Appleton. Silverman, William A. 1989. Neonatal Pediatrics at the Century Mark [Address, Centennial Meeting of American Pediatric Society, 3 May 1998]. Perspectives in Biology and Medicine, 32: 159-65. - 1992. Overtreatment of neonates? A personal retrospective. Pediatrics, 90: 971-6. Voora, Sambasivarao, Gopal Srinivasan, Lawrence D. Lilien, Tsu R Yeh, and Rosita Pildes. 1982. Fever in full-term newborns in the first four days of life. Pediatrics, 69: 40-4.

Susan and the Simmonds-Sheehan

Syndrome: Medicine, History, and Literatures CARLA C. KEIRNS

A Gentle Lady I was a third-year medical student when I met Susan, a gentle 54-yearold lady from a traditionally Italian-American, working-class part of South Philadelphia. She had been sent to the hospital by her primary care doctor, whom she had gone to see for routine follow-up after a bad bout with pneumonia. When she presented to the hospital emergency room, she had a low plasma sodium level of 111, with the normal range being 135-145. The numbers suggested an imminently life-threatening condition, but she had no symptoms at all. Susan was quite puzzled by all of the fuss, since she felt fine. Her doctor had told her that her sodium was abnormal, and she had expected to get some treatment in the emergency room and go home. She was not prepared to spend the night at the hospital. It would come to pass that both my understanding of what had happened to Susan, and what I came to offer as part of her treatment team, relied as much on my skills and training as a historian as they did on my medical education. The routine electrocardiogram (EKG) in the emergency room was even more alarming than the blood studies, giving everyone chest pain but Susan. It showed deep, symmetrical, inverted T-waves in nearly all leads - a sign of massive stroke or heart attack - and somewhat consistent with a few rarer entities, including pericarditis (inflammation and fluid build-up in the sac around the heart), myocarditis (inflammation of the heart muscle), or electrolyte abnormalities (most likely of potassium but perhaps sodium) which would hinder the heart's electrical signaling. She was immediately sent for a computed tomography (CT) scan of her head to see if there was a stroke, but nothing was found.

Susan and the Simmonds-Sheehan Syndrome 117

Subsequent cardiac catheterization showed completely normal coronary arteries and cardiac wall motion, dismissing the possibility of major heart attack definitively. Susan's current condition was traced to events thirty-four years previously when at the age of twenty, she had lost a baby at seven months' gestation. Her mother said that on that night in 1967, she had come home to find her daughter 'white as a sheet' and bleeding; she insisted that Susan go to the hospital at once. After the loss of her baby, Susan stopped menstruating. None of the dozens of doctors whom she saw in the following years could help her to become pregnant. If Susan's doctors in the late 1960s had determined the cause of her infertility - as they may well have done - Susan did not share their understanding. She knew what she needed to know, though: that she could not have her own children. Eventually, she said, 'I figured it was God's will.' After she gave up her quest to have a baby, she adopted two daughters, who are now in their late twenties. When Susan came to the emergency room that night, she knew that she had had an abnormal blood test, but she never suspected that her condition now could be linked to the loss of her son all those years ago. Except for amenorrhea and infertility, she had been perfectly healthy. Three Pathologists, One Master Gland Susan had a condition that in the English-speaking world (as well as the French- and Spanish-language literature) is called Sheehan's syndrome, named for the Scottish pathologist, Harold L. Sheehan, who described it in 1937. The anterior pituitary gland, in concert with the hypothalamus, controls hormone production and release throughout the body. This tiny gland and the hormones it produces, controlling height, weight, strength, sex, and reproduction, was ready-made for the kind of mystique that surrounded it in the mid-twentieth century: popular magazines and textbooks used metaphors of the pituitary gland as a benevolent sovereign over the glands and, through them (its 'generals' or 'governors'), the rest of the body. In pregnancy, the pituitary grows larger to allow the release of the hormones necessary to support the fetus. This growth makes the pituitary vulnerable to hypotension or blood loss, because the balance of blood supply and demand in the enlarged gland leaves a very narrow margin of safety. If the pituitary is destroyed by loss of its blood supply, a pervasive hormonal failure results called 'panhypopituitarism.' Its

118 Carla C. Keirns

effects include absence of lactation, menstruation, and ovulation, and also of the thyroid and adrenal hormones the body needs simply to function (figure 16). In the German and Japanese literature, panhypopituitarism is known for the German pathologist Morris Simmonds, who described a series of cases in 1914. Both of these men were preceded, however, by L.K. Glinski, a forgotten Polish physician who published the first known case of postpartum necrosis of the pituitary gland in 1913 in Krakow. Simmonds's series featured causes of destruction of the pituitary gland other than stroke during pregnancy or birth, including syphilis, tuberculosis, and tumors. The epidemiology of the disorder changed with the relative decline of tuberculosis and syphilis in the population. By the second half of the twentieth century, the main causes of pituitary failure were no longer infections and strokes due to blood loss in pregnancy; these conditions had been improved by antibiotics and transfusions. Rather, traumatic destruction of the gland by tumors and accidents had become the main threats to the pituitary. This epidemiological shift from infection to cancer and trauma is a microcosm of the epidemiologic transition from infectious to degenerative diseases - seen throughout the developed world in the twentieth century. In many cases of postpartum hemorrhage, damage to the pituitary is immediately apparent because the mother does not lactate (produce milk); nor does she resume her menses. In Susan's case, her subsequent infertility was consistent with this diagnosis. Although the modern textbooks describe Sheehan's syndrome as an all-or-nothing phenomenon, the pituitary gland can have a stroke along any watershed distribution (the tissue served by a single vessel, like land by a single river, suffers damage according to damage to its feeding vessels). Harold Sheehan had known this, and described many cases of partial pituitary failure in his 1937 case series. Late-stage 'burnout/ as in Susan's case where she lost her remaining pituitary function decades after the initial insult, can be triggered by illness or simply many years of reliance on a small number of remaining cells. Partial pituitary loss can be converted to a complete failure when those overworked cells get 'tired' or are damaged by another illness. Susan laughed ruefully when we explained to her that these tired, overworked cells could just 'give up.' A wife, mother, and recent widow, she knew about exhaustion. Because thyroid and adrenal function can be maintained with a small

16 In this comparative image, a healthy pituitary (left) is seen side by side with an infarcted pituitary going through its disappearing act of fibrosis (Sheehan, 1954, 203).

120 Carla C. Keirns percentage of the normal pituitary, these functions are most likely to be preserved at first, only to be lost much later, even decades after the initial insult, as they were in our patient. These long-term manifestations of the Simmonds-Sheehan syndrome are not well described in the literature because many of the articles and book chapters on hypopituitarism of pregnancy are written by obstetricians who treat acute cases. But late-stage manifestations are often treated by nephrologists (who are responsible for managing the resulting blood electrolyte abnormalities) and endocrinologists (who manage hormone replacement therapy). Because Susan was seen in a tertiary-care teaching hospital in the United States, her clinical diagnosis of hypopituitarism of pregnancy was confirmed by thousands of dollars of expensive tests of the pituitary hormones and the secretions they are supposed to control and an MRJ of her head to demonstrate the precise anatomy of her pituitary. (The CT scan that she had in the emergency room is good for detecting acute strokes and trauma, but cannot show the tiny pituitary.) All the data were consistent with this diagnosis, and she received thyroid hormone, glucocorticoids to replace adrenal function, and estrogen. In another medical setting, Susan might have been evaluated with simple blood tests and the clues from her past, and the diagnosis, confirmed by her response to treatment. It's a question of medical epistemology. How many tests do you need? How sure is good enough? The kidney specialist responsible for Susan had only seen two similar cases in his thirty years of practice, and the cardiologists had seen none. They felt the need for more proof because of their inexperience with this condition. The doctors in Mexico or Africa who see far more hypopituitarism of pregnancy have the confidence of their clinical judgment, honed by many similar cases, and no MRI machines. In contrast, in teaching hospitals in the United States, considerations of cost are often overridden by curiosity, fear (sometimes of lawsuits, other times simply of making mistakes), and the fact that in a for-profit health care system, doctors have no assurance that a dollar saved will go to another needy patient rather than to corporate perks for insurance company executives. Whatever their merits, none of the tests explained Susan's electrocardiogram findings (figure 17). None of the cardiologists who saw her (half of the department) had ever seen such an EKG in the absence of massive stroke or heart attack. They speculated that the low sodium was behind it, despite the fact that none of the dozen case reports and series in the world literature described a case of hypopituitarism or hormonally based low sodium, and none showed an EKG like this one.

Susan and the Simmonds-Sheehan Syndrome 121

17 Susan's electrocardiograms, (top) Susan's EKG in the emergency department was indicative of major stroke, serious heart attack, or another critical condition, (bottom) It took eight weeks, but Susan's EKG normalized completely. Courtesy of Louis Dinon, MD.

122 Carla C. Keirns

The literature supporting similar EKG abnormalities in case of abnormal potassium was much more robust, but Susan's potassium was stubbornly normal. So why were the electrical signals from her heart so off kilter? And why were the cardiologists who saw her unable to explain the findings? Prevention of panhypopituitarism of pregnancy (known by whichever eponym, Sheehan's syndrome or Simmonds-Sheehan syndrome) is based on blood transfusions and surgical ligation of bleeding during delivery or fetal loss. Because of our ready access to surgery and blood transfusions, it is now rare in the developed world. In the 1940s and 1950s, Sheehan's syndrome was more common in industrialized nations such as the United States than it is now, both because blood transfusion was still being developed in the 1940s, and because obstetrical services were not readily available to the poorest and most rural areas. (Of course even when they were available, not everyone used them.) Most current studies come from third world countries with good research institutions but inadequate health services (Canales et al., 1972; Cenac et al., 1987; Sidibe, 2000; Zarate et al., 1972). Furthermore, replacement of thyroid and adrenal hormones has been available for more than fifty years; as a result, none of the cardiologists at our hospital, even the one who started practice in 1948, had much experience with profound deficiencies of these hormones, which could, in principle, affect the electrical conduction in the heart. Consultation of all of the major textbooks of cardiology offered no answers either, and few clues. I was not satisfied. Susan had a strange, alarming pattern on her EKG and no one knew why. Furthermore, the hypothesis that her impressively low sodium was behind it was not borne out by the literature, nor by our own patient, who continued to have an abnormal EKG even when treatment normalized her sodium. I knew that Simmonds-Sheehan syndrome had been much more common in the past, so there was undoubtedly old literature on it. Also the literature on EKG technique and interpretation for the first half of the twentieth century, when practice was being established, was rich and diverse, and contained hundreds of papers on the fine details of electrocardiography in both common and rare diseases (Burch and DePasquale, 1990; Fye, 1994; Howell, 1995; Snellen, 1995). This is a feature of many new technologies: they are developed for one purpose, used and written about very widely initially, and eventually the medical community settles on what they are and are not good for. So I guessed that EKG abnormalities in

Susan and the Simmonds-Sheehan Syndrome 123

Sheehan's syndrome might be one of those scientific facts that had once been known, only to be forgotten in the dusty, crumbling journals of days gone by. I was further inspired by the story told by one of my genetics professors about the number of human chromosomes - they were initially counted to be forty-eight instead of the forty-six we accept today, but the original paper, which had been cited as counting forty-eight, actually said that it was either forty-six or forty-eight. Both my scientific and historical training pointed to looking at the earliest publications on this disease. The physicians with whom I was working shared the common conceit that everything worth knowing from the old literature was contained in their textbooks - everyone, that is, except Dr Louis Dinan, our elder statesman of cardiology. He encouraged my foray into what I knew as history, and he remembered his first years in practice. My colleagues' reticence to track down papers from the 1930s, '40s, and '50s describing EKG findings in Simmonds-Sheehan syndrome was not simply philosophical; it was also a bibliophilic challenge. Medline, the computerized index to the medical literature, began in 1966. This project would take me to the old paper Index Medicus, which the younger doctors did not know how to use, and which our professors avoided because of memories from their education and early practice of long hours searching month by month and year by year through thick tomes. Everyone else seemed resigned to our mystery, but I couldn't let go without trying out my historian's toolbox. I used every trick - papers on the history of endocrinology, modern Medline searches, Index Medicus, and, most important, looking in textbooks and papers for their references and following the trail from citation to citation. Papers from the 1970s cited those from the '60s and '50s on treatment of panhypopituitarism, and those from the 1950s cited the earliest case descriptions. My review of the older medical literature revealed the answers and stunned my colleagues. They kept asking, 'Where did you find this stuff?' As I had suspected, the first papers were crucial. In an extensive review of cases of hypopituitarism from many causes (chiefly destruction from infections, neoplasia, and hypoperfusion), Sheehan and Summers (1949) noted that 'Electrocardiographic findings were noted in twenty cases. In thirteen patients low voltage electrocardiograms were recorded; in four there were negative T waves in leads 2 and 3 [3-lead tracings]; irregularity of rhythm was recorded in three cases. The changes are similar to those of myxedema, and treatment with thyroid may produce a return to normal.' Over the next fourteen years, eleven other

124 Carla C. Keirns

series of patients with hypopituitarism were published by teams from eight countries. In every group, the electrocardiographic findings mirrored Sheehan and Summers's original work, with the diffuse T-wave inversions and prolonged QT interval that we saw in Susan. They showed that these EKG changes were to be expected in this condition (see, for example, Bernart and de Andino, 1958; Del Castillo et al., 1963; Querido et al., 1954; Surawicz and Mangiardi, 1977; Whitaker and Whitehead, 1954). With the availability of crude thyroid extracts in the 1930s (Medvei, 1993, 179) and cortisone starting in 1949 (Cantor, 1992; Kendall 1971), researchers began to wonder if the electrocardiographic findings of hypopituitarism would be reversible with hormones. Two to eight weeks of thyroid and cortisone replacement was sufficient to reverse the changes - exactly what we would see in Susan's case - and the electrocardiograms remained normal while the hormones were continued indefinitely (Beck and Montgomery, 1957; Daoud, Surawicz, and Gettes, 1972; Hartog and Joplin, 1968; Kosowicz and Roguska, 1963; Pyke de Giorgi, Sandoz, and Beltramino, 1967; Stephan et al., 1965). Despite decades of study, the precise mechanism of these electrocardiographic anomalies in hypopituitarism has never been elucidated to the molecular detail that modern clinicians expect. Most early researchers attributed these changes to deficiency of either thyroid hormone or cortisol, likening them to the established electrocardiographic profiles of myxedema and Addison's disease respectively. Modern clinicians would relate them to alterations in the behavior of ion channels in the heart due to the deficiencies of thyroid hormone and cortisol. Although this mechanism has not been proven in the laboratory, it is plausible, and fills an important clinical need - for answers. Medical practitioners must find a way to explain diseases, even those that we do not fully understand, in modern scientific vocabularies. These explanations serve as the answers that our patients need, in a form that they will accept, and they also reassure physicians by making the messy world of clinical practice feel like a predictable science. Times, Places, and Medicines Even if Susan's doctors in 1967 had made the diagnosis of pituitary failure, nothing could have helped her to become pregnant or sustain a pregnancy to term. The scientific field of reproductive endocrinology that laid down the precise hormonal cycles was well established, but

Susan and the Simmonds-Sheehan Syndrome 125

the technology of intervention was not. Her physicians could have assisted her with thyroid and adrenal function if she had shown any signs of deficiency but she had not. For the team of physicians taking care of Susan, history offered access to the medical literature from the 1940s and 1950s. Only there could one find detailed descriptions of clinical, laboratory, and electrocardiographic findings of panhypopituitarism, a condition that is largely absent from contemporary textbooks of cardiology. This literature helped us to understand what was happening in Susan's body, and why it did not accord with our expectations. For Susan, history offered reassurance that she had received appropriate treatment in the decades since she lost her baby. In 1967, no doctor could help her to become pregnant without a functioning pituitary gland. The passage of time and the changes in personal and medical history in this case led Susan and all her caregivers to reflect on the powers and limits of medicine, and how they had changed in the past quarter-century. They reminded us of the privilege of living in a time and place where people have access to blood transfusions, surgery, and other life-saving technologies. But they also served as a sobering reminder of the life-altering nature of many medical conditions, even when treated. BIBLIOGRAPHY Beck, R.N., and D.A.D. Montgomery. 1957. Treatment of hypopituitarism. British Medical Journal, 1: 441-4. Bernart, W.F, and A.M. de Andino. 1958. Electrocardiographic changes in hypopituitarism of pregnancy. American Heart Journal, 55: 231-8. Burch, G.E., and N.P. DePasquale. 1990. A History of Electrocardiograph]/. San Francisco: Norman. Canales, E.S., A. Zarate, J.T. Aleman-Vado, and L. Ayala-Valdes. 1972. Frecuencia del syndrome de Sheehan en pacientes con colapso vascular hemorragico post-parto. Ginecologia y Obstetrica de Mexico, 31: 571-4. Cantor, David. 1992. Cortisone and the politics of drama, 1949-55. In J.V. Pickstone (ed.), Medical Innovations in Historical Perspective. London: Macmillan; New York: St Martin's Press, 165-84. Cenac, A., M. Develoux, I. Soumana, A. Touta, G. Bianchi, and J. P. Straboni. 1987. Le syndrome de Sheehan en Republique du Niger. Medecine Tropicale, 47: 17-22. Daoud, F.S., B. Surawicz, and L.S. Gettes. 1972. Effect of isoproterenol on the abnormal T wave. American Journal of Cardiology, 30: 810-19.

126 Carla C. Keirns Del Castillo, E.B., R.F. Scharer, A.H. Guardo, A. Larotonda, and C.A. Zucal. 1963. Considerations a propos de quelques troubles cardiaques au cours du syndrome de Simmonds-Sheehan. Presse medicale, 71: 806-7. Fye, W.B. 1994. A history of the origin, evolution, and impact of electrocardiography. American Journal of Cardiology, 73: 937-49. - 1996. American Cardiology: The History of a Specialty and Its College. Baltimore: Johns Hopkins University Press. Glinski, L.K. 1913a. Z. Kazuistyki Zmian anatomopatologicznych w przysada Mozgowej. Przeglad Lekarski Wydawany Staraniem Oddsiato Nauk Przyrodniczych I Lekarskich c.k. Towarzystwa Naukowego Krakowskiego, 4: 13-14. - 1913b. Uber die Hypophyse im allgemeinen und ihre Veranderungen wahrend der Schwangerschaft. Klinisch-therapeutische Wochenschrift, 20: 70917, 742-50, 769-74. Hartog, M., and G.F. Joplin. 1968. Effects of cortisol deficiency on the electrocardiogram. British Medical Journal, 2: 275-7. Howell, Joel D. 1995. Technology in the Hospital: Transforming Patient Care in the Early Twentieth Century. Baltimore: Johns Hopkins University Press. Kendall, B.C. 1971. Cortisone. New York: Scribner. Kosowicz, J., and J. Roguska. 1963. Electrocardiogram in hypopituitarism: reversibility of changes during treatment. American Heart Journal, 65: 17-23. Marsh, M., and W. Ronner. 1996. The Empty Cradle: Infertility in America from Colonial Times to the Present. Baltimore: Johns Hopkins University Press. Medvei, V.C. 1993. The History of Clinical Endocrinology. New York: Parthenon Publishing Group. Pyke de Giorgi, M.N., J.R. Sandoz, and A.G. Beltramino. 1967. Los alteraciones electrocardiografiques en el sindrome de Simmonds-Sheehan. Prensa Medica Argentina, 54: 686-90. Querido, A., J.J. Van der Werff ten Bosch, PS. Blom, and H.A. van Gilse. 1954. Post-partum hypopituitarism. Acta Medica Scandinavica, 149: 291-310. Sheehan, H.L. 1937. Postpartum necrosis of the anterior pituitary. Journal of Pathology and Bacteriology, 45:189-214. - 1954. The incidence of postpartum hypopituitarism. American Journal of Obstetrics and Gynecology, 68: 202-3. Sheehan, H.L., and V.K. Summers. 1949. Syndrome of hypopituitarism. Quarterly Journal of Medicine, 18: 319-78. Sidibe, E.H. 2000. Le syndrome de Sheehan: une experience africaine. Annales de medecine interne, 151: 345-51. Simmonds, M. 1914a. Ueber Hypophysisschwund mit toedlichem Ausgang. Deutsche Medizinische Wochenschrift, 40: 322-3. - 1914b. Ueber Hypophysisschwund mit toedlichem Ausgang. Virchows

Susan and the Simmonds-Sheehan Syndrome 127 Archivfiir pathologische Anatomie und Physiologic undfiir klinische Medizin, 217: 226-39. Snellen, H.A. 1995. Wttlem Einthoven (1860-1927): Father of Electrocardiograph]/: Life and Work, Ancestors and Contemporaries. Dordrecht; Boston: Kluwer Academic Publishers. Stephan, E., E. Laham, M. Panier, and J. Saleh. 1965. Coeur et hypopituitarisme. 1 Anomalies electrocardiographiques constantes. 2 Une complication rare: 1'epanchement pericardique (A propos de 10 cas). Archives des maladies du coeur et des vaisseaux, 58: 1493-1502. Surawicz, B., and M.L. Mangiardi. 1977. Electrocardiogram in endocrine and metabolic disorders. Cardiovascular Clinics, 8: 243-66. Whitaker, S.R.F., and T.P. Whitehead. 1954. Diagnosis and treatment of hypopituitarism. British Medical Journal, 2:265-9. Zarate, A., E.S. Canales, L. Ayala-Valdes, and J.T. Aleman-Vado. 1972. La frecuencia de panhipopituitarismo en el syndrome de Sheehan. Ginecologia y Obstetrica de Mexico, 31: 575-82.

This page intentionally left blank

Recognizing New Diseases

This page intentionally left blank

The Histories of a History: The Boy, the Baron, and the Syndromes MAX SHEIN

My encounter with a clinical Clio took place in October 1998, as I was delivering a paper at the fifth Mexican Congress of History and Philosophy of Medicine. We were meeting at the old university in the elegant eighteenth-century city of Queretaro, and I was at the podium. In that paper, called 'A Travesty of History' (Shein, 1999), I was arguing against what I believe to be the unjust use of the name of Baron Miinchhausen as an eponym for two syndromes that do not correspond to his history; nor does this name reflect the bizarre etiology of either condition. In adult Munchausen syndrome, patients 'fabricate' serious symptoms in themselves; in the other far more serious syndrome, Munchausen-by-proxy, adult parents 'fabricate' symptoms in their children.1 I thought that I had never seen a case of either syndrome in my practice. But I had read about them with horror and increasing frequency in the pediatric literature. In the midst of reading that paper, I was struck by the memory of a little patient, whom I had not seen for a long time. His problem suddenly seemed to fit my description of those syndromes. In fact, I had never really been certain of his diagnosis prior to that moment, although I had seen him repeatedly over a long time. In the same instant, I realized that his symptoms belonged to the adult form of the disease; yet he had been a small child when I first examined him. I had never heard of any such case being described in the literature. Back at my office in Mexico City and fired up by this new insight, I wanted to contact the family. But I could remember only the boy's first name; I will call him George. I asked two of my longest-serving nurses and also the surgeon who had operated on him, but no one could remember the surname of a lad seen in our pre-computer past. Without

132 Max Shein

it, George's chart could not be found, and I was distressed. Nevertheless, the details of his case were still vivid in my mind. The History of the Boy Born after a normal pregnancy and delivery in 1979, George was ten years old when I first saw him. He had an uneventful infancy with normal growth and development, interrupted only by mild diseases of childhood. The unsuspected and undiagnosed 'syndrome' started at age ten. In my absence, one of my associates diagnosed him with mumps, although he had been vaccinated properly in early infancy. In the chart, I recalled, my colleague had written 'minimal swelling of the right parotid gland, but with excruciating pain.' The symptoms lasted only a few days. Nine months later, George was brought to us again, this time complaining of unbearable pain in both cheeks with no swelling at all. I asked for laboratory tests to confirm the diagnosis of inflamed salivary glands - such as amylase and immunoglobulins - but they were negative. The same miserable symptoms recurred six months later. We were worried that we might be missing a tumor, stones, or other abnormalities of the salivary glands. Under general anesthesia, he underwent a bilateral sialography with a CT scanner; it ruled out any problem in the salivary ducts. On all three occasions, George was given strong analgesics for several days until his pain subsided. Then, he was well for fifteen months. In early 1992, he came back with a new symptom: testicular pain. By then, George was thirteen years old. The severe pain in his left testicle was not accompanied by swelling or any other physical signs. I prescribed a mild analgesic and sent him home. His mother brought him back twenty-four hours later because the pain was much worse. The senior surgeon in my group examined him, and we decided to watch him carefully on slightly stronger analgesics. Because of the apparent worsening of the pain, the surgeon decided to operate with a tentative diagnosis of a torsion of the testicular appendix. He excised the testicular appendix, but the testicle looked normal and there were no signs of epididymitis. The next day, the pathologist reported that the testicular appendix had been normal. For seven months, George had no problems. But on a Saturday night in August 1992, he returned because of 'terrible pain,' now in the right testicle, and was admitted to hospital. The pediatric residents who

The Boy, the Baron, and the Syndromes 133

examined him the following morning called the surgeon who was covering for our group that weekend; he had never seen George before. Finding no swelling in the scrotum or the testes and in view of the previous history, he decided to watch and wait for the effect of a strong analgesic. George suffered 'unbearable' pain for the next five hours. Once again, the tentative diagnosis was torsion, either of the right testicle or of the testicular appendix. Finally, this surgeon decided to operate too, and once again, a conservative exploration of the scrotum failed to confirm the diagnosis. After his second operation, George kept complaining of fleeting pains in one or both testicles, but they disappeared after three months. Three years passed. At age sixteen, George came back describing several months of pain in the outer aspect of his right ankle. An orthopedic surgeon diagnosed it as a sprain and prescribed painkillers by mouth, and he injected analgesics and cortisone directly into the joint. There was no improvement, and George took to using a crutch. His mother reported that the orthopedist was having difficulty deciding between applying a cast or operating; she brought George back to me for an examination and a referral for a second orthopedic opinion. The boy complained of severe pain when I pressed on the outer bone of the right ankle, but I could find no other signs of disease. His X-rays were normal. I recommended the senior orthopedist at our hospital and decided to call him myself to explain George's strange past history, especially the two testicular operations. I remembered saying that George was 'a kind of hypochondriac.' A few days later, the surgeon told me that he thought George had a simple sprain; he had applied an air cast, prescribed new painkillers, and advised the continuous use of a crutch for a few weeks. He was sure that things would improve. About six weeks later, the orthopedist called me again to report that while he was away on vacation, his junior partner had performed an arthroscopy on George's ankle, because the pain had worsened. He found a subchondral fracture of the external tibial malleolar articulation (the outer ankle bone) and he performed a synovectomy. The stitches were removed a week later, and the lad enjoyed a 'wonderful recovery' and had been discharged from their care. About a year later, George was seen by a fourth orthopedist with exactly the same story of pain, now in the left ankle. The new consultant asked for several laboratory tests to rule out rheumatic or collagen disease. All the results were normal, including X-rays of the ankle.

134 Max Shein Nevertheless, about seventy-two hours later, he decided to perform an arthroscopy because George was in agony from severe, uncontrollable pain. He found no anomalies. Another year later, when George was almost eighteen years old, I was surprised to be approached about him by the neurologist who consults weekly for our group. He wanted to ask me about George, whom he had been seeing - always accompanied by his mother - for the last two or three months in his private office. Now the boy had unusual symptoms of sudden extension and clenching of his hands that coincided with short periods of 'amnesia.' The physical examination, blood chemistry, and an electroencephalogram had been normal. When I inquired, he replied: 'No! I know nothing about any previous surgical interventions!' Because of the peculiarity of the case, the neurologist had asked George's mother to make an appointment in my office so that we could examine him together and decide on the next steps. But they did not show up. All these myriad details of the peculiar case flooded my mind at the history conference. And yet - unbelievably - I had forgotten the family name. The History of the Baron There are magical cities, magical people, and mythical things. Sometimes they coincide, and a famous psychoanalyst once said that they synchronize in time. But I think that they are 'serendipitous' events, happy and unexpected discoveries (OED, vol. 2, 492; Perez-Tamayo, 2000) that coincide in my life to bring pleasure, insight, and wisdom. One such event was the 1990 journey with my wife to Prague, where my historical interest in the baron was kindled. One day, we wandered into a little shop, where I saw a clay figurine of the famous and mythical baron of Munchhausen, riding a cannonball (figure 18). I thought that I recognized him from a movie that I had seen a few months before. Intrigued, I asked the attendant if it was baron Munchhausen. 'Of course!' came the reply. 'All European children love his stories; their parents too!' And, as usual in my own case, I succumbed to the collector's temptation. Back home in Mexico, I mused over the discrepancy between the name of Munchhausen, as it is used medically to identify those syndromes of malingering, and the charming stories of his life and his own tall tales, still loved by children and adults alike in many countries -

The Boy, the Baron, and the Syndromes 135

18 Figurine of Baron von Miinchhausen riding on a cannonball, purchased by the author in Prague. Private collection of Dr Max Shein.

including England, where the syndromes were first described. I determined to investigate the double history of the baron and of the syndromes through medical and nonmedical literature. I also located and purchased that film that I had seen the year before. A renowned figure of the eighteenth century, Karl Friederich Hieronymus, Baron Miinchhausen, was born 11 May 1720 in Bodenwerder (near Hanover) in Lower Saxony, Germany. He belonged

136 Max Shein

to one of the oldest families of the German aristocracy; from time to time, the name still appears in the news.2 The baron's first marriage was childless and lasted forty-six years until his wife's death in 1791. Three years later at the age of seventy-four, he married a second time: his bride was a seventeen-year-old girl. After just six months, however, he banished the new wife and sued for divorce on the grounds of proven adultery (Burman and Stevens, 1977; Strassburg and Peuckert, 1984). He died 22 February 1797. At age twenty, Miinchhausen had enrolled in the army of Peter II of Russia, which was locked in a struggle with Turkey. After several years of battle, in which he had distinguished himself as a valiant and courageous officer, he abandoned military service and retired to a leisurely life with his possessions in Bodenwerder. At his home and in the local taverns, he told inconceivably tall tales about his army past to the great amusement of his friends and neighbors. A few years later, he published a little booklet entitled Vademecum filr lustige Leute (Vademecum for Happy Companions). These stories of the illustrious baron were picked up by the German writer Rudolph Erich Raspe (1737-99) for his own book, written in English and published in 1785, called Narrative of the Marvelous Trips and Russian Campaigns of the Baron of Miinchhausen. The baron was still alive. A man of fertile imagination but dubious probity, Raspe had been exiled from London for his financial practices. He enjoyed immediate success for this rendition of Munchhausen, and a second edition appeared in two years. Raspe's book was beautifully illustrated by an unknown painter and is still widely available in several languages, including Spanish (Jones, 1986; Munchhausen, 1992; Raspe, 1981). Eighteenth- and nineteenth-century editions are now sold for thousands of dollars by antiquarian dealers. Raspe's Narrative attracted the attention of the well-known German poet August Burger (1747-94), who translated it into German, adding the twist of poetical satire and thereby converting Munchhausen's tales into a classic of German literature. Munchhausen also inspired famous painters and engravers, such as Gerhard Oberlander and Gustave Dore (Burger, 1964; Raspe, 1981). The stories are improbable yarns. Take for example the tale of the halved horse: cut in two during a fierce battle, the horse was stitched back together with laurel stalks, only to carry the baron into the fray once again and, of course, to victory over the Turks. The most popular adventure is depicted by my clay figurine found in Prague. The baron flies on a Russian cannonball to spy on the Turkish rear guard; sud-

The Boy, the Baron, and the Syndromes 137 denly realizing that he needs to return, he leaps through the air onto an enemy cannonball speeding in the opposite direction, and is quickly and safely delivered to his own camp. Miinchhausen tells dozens of stories in which his superlative subordinates - Albrecht the strongest, Berthold the swiftest, Adolf of the telescopic eyes, and Gustav who blows stronger than a hurricane - win battle after battle. And that is how the baron became the great hero of European children. Since children are my life-long passion, I too fell under his spell. No doubt, the baron must be seen as just one more in the long lineage of tellers of tall tales, originating perhaps with the second-century Greek historian and writer Lucian of Samosata (Nueda and Espina, 1990, 1735-6). Lucian described trips to the moon and extraordinary islands; he 'traveled' more than any navigator of the known world without leaving home. The baron has also been compared to the Irish writer Jonathan Swift (1667-1745), author of Gulliver's Travels in Lilliput and Brobdingnag (Magill, 1989, 967-82). Swift and Munchhausen were near contemporaries. Curiously, Swift too (like Lucian) wrote of extraordinary island communities. Lucian, Swift, and the baron traveled in the most marvelous of vehicles: their impressively creative imaginations, ships without sails, valiant half-horses, and cannonball taxis. How did this colorful character who so delighted children manage to become a disease? History of Two Syndromes Munchausen syndrome (MS) of adults was first described by Richard Asher in 1951 in the British medical periodical Lancet. In MS, the peculiar psychopathology of patients leads them to fabricate symptoms of factitious (unnatural or artificial) sicknesses. Asher said that MS was 'respectfully dedicated to the baron, and named after him because the stories, like those attributed to him, are both dramatic and untruthful' (339). He provided no other arguments, explanations, or apparent knowledge of the baron's life (Asher, 1951). Asher thought that he had discovered a previously unknown condition, characterized by self-harm. Patients are usually admitted to a hospital with acute sickness and a dramatic history; all cases seem to be true emergencies of organic origin. Symptoms include: severe abdominal pain that leads to surgical intervention; profuse 'hemorrhages' with hemoptysis, or melena, due to self-inflicted lesions or ingestion of blood;

138 Max Shein neurological problems, such as unbearable headaches or perfectly described (but unobserved) seizures. Some patients have had so many operations that they 'proudly' display multiple abdominal scars; sometimes, they develop genuine intestinal obstruction from peritoneal adhesions. For doctors, MS also carries an element of anxiety over legal repercussions. What if a patient or a family member sues for unnecessary surgery? What if skeptical hesitation results in missing a dangerous problem? Most cases of adult factitious disorders can be traced to early adulthood; a few begin in late adolescence. The diagnostic dilemma is understandable: factitious syndromes are so rare that they do not permit elaboration of a robust concept. In other words, from a psychiatric point of view, it is doubtful that the syndromes constitute a distinct disease category. Adult patients share characteristics with those who suffer from personality disorders, with a mixture of hysterical and psychopathic features. They have also been diagnosed as schizophrenic, but they lack the characteristic affective problems and disordered thought patterns. Their behavior may be strange, grotesque, and bizarre, but it is not psychotic. The most remarkable feature of the syndrome is its apparent senselessness. There is little secondary gain for the Munchausen patient. Malingerers may earn the 'reward' of a day off work or exemption from military service; however, these people seem to lie merely for the sake of lying, and their masquerade brings pain. They supply false names, false addresses, and false occupations. Frequently, they sign themselves out of hospital soon after surgery, with their wounds scarcely healed. Some patients are so troublesome that they are inscribed on hospital 'black lists/ but then, they move to other cities. The only practical recourse is for the doctor to make an alliance with a close relative and to confront the patient with the diagnosis without reproach. An early diagnosis can avoid risky surgery for nonexistent pathology and prescriptions for unnecessary medication; treatments can lead to addiction or complications that produce new symptoms to further cloud the picture. Management should rely on confidentiality, empathy, and sympathy between patient and physician. Twenty-six years after Asher's report, Roy Meadow described the Munchausen-by-proxy syndrome (MBP), also in Lancet (Meadow, 1977). He used, but did not discuss, the same eponym. Meadow emphasized that MBP was one of the most serious forms of child abuse. The facti-

The Boy, the Baron, and the Syndromes 139 tious symptoms are caused by an adult, usually the mother, less frequently the father, and sometimes a baby-sitter (Makar, 1989). The symptoms are even more variable than in adults, and the diagnosis can go undetected for months or years. Apnea, convulsions, vomiting, diarrhea, bleeding, kidney problems, poisonings, and repeated infections (of gut, skin, nervous system or blood) are just some of the symptoms. The child is a victim of the adult's psychopathology. Ten percent of cases end in death (Johnson, 2000, 70-2, 110-11, 118, 733). Meadow wrote the case histories of the first three children with MBP and differentiated this syndrome from adult MS. In 1982, he described twenty-seven more child cases, of whom nine had died and two suffered severe brain damage; these children had eighteen siblings who had already died suddenly before age two years without ever being suspected as MBP cases. They also had fifteen living brothers or sisters who presumably were still at risk. The most poignant finding was that 19 percent of the children had died six months after their first symptoms, and a third had died a year later, meaning that they had endured the fabricated sufferings for months (Meadow, 1982). Warning signs for the diagnosis of MBP include a set of ten criteria that demand careful attention to the behavior of both parent and child. Some mothers were once victims of MBP themselves (De Noon, 2002; Meadow, 1982). But these criteria are merely psychological profiles; no reliable, pathognomonic, physical signs have yet been found to confirm the diagnosis of MBP. The best evidence is indirect, in the form of 'split samples.' A term used in forensic medicine, 'split samples' separate (or split) the elements of body fluids to detect the source of factitious illness; for example, in vomited liquids, a split sample may find ipecac, which provokes incorrigible vomiting; in stool, laxatives, which promote diarrhea, or shampoo mixed with iodine, which looks like blood. Hidden video cameras can accomplish the same purpose and have shown parents smothering children to induce asphyxia or seizures; however, secret filming of parents suspected of child abuse is not easily permitted by judges (Mart, 1999). In MBP an increasing number of criminal and civil actions have been filed against parents; some have resulted in convictions. But several of those convicted and even jailed for child abuse were later found to have had nothing to do with their children's illnesses. Now groups of lawyers specialize in defending mothers accused of MBP. I find it difficult to understand why this clinical entity, which should be of great concern to psychiatrists, seems to have been relatively ne-

140 Max Shein glected in their literature. MBP was not described in psychiatry journals until 1993, and only in nineteen papers, compared with the 143 papers in the pediatric literature (Schreier, 1999). The literature acknowledges the complexity of diagnosing factitious disorders and differentiating them from malingering, hysterical conversions, and somatization. We have no reliable epidemiological data for either MS or MBP; sporadic reports from a few hospitals cannot be applied to clinical practice. Psychiatrists and psychoanalysts have ventured various incomplete theories to explain the cause and the typical psychopathology, but it is too early to suggest an adequate treatment. Little has been written about outcome in MBP (Libow, 1995), and I found only one article by a survivor (Bryk and Siegel, 1997). She wrote: 'Each time I review my medical records, I go through a period of mourning for a childhood lost. I am disfigured with permanent physical scars ... and continue to battle with emotional wounds/ It was not until she was thirty years old and a parent herself for the first time, that she realized that she needed professional help to deal with her mother's abuse. She built a new life with her husband and two daughters and in her career as a nurse, just like her mother. But she has no contact with her birth family (with either parent, or her one brother, who is also a MBP case), because she feels that it would force her to deny everything that happened to her. But we should not be discouraged. Pediatricians are involved from the moment the child is born and watch over growth and development. Unlike most other specialties with their emphasis on healing disease, our main role is prevention. Pediatrics is a way of living with and for children. In MS and MBP, some cases could have positive outcomes, especially if we learn to detect the proxy cases early and shelter the mother and her child with the sympathy and empathy that characterize good pediatric care. We are not only the physicians of children; we must be their advocates, even within families. My findings about the baron and the syndrome led to the historical paper that I read at the Queretaro meeting. I decried the travesty that history had committed against the great storyteller with the unfair appropriation of his name for a problem characterized by lies and harm. The baron's intent was to entertain and amuse, not to deceive (Klotz, 1992; Vaisrub, 1974). I argued for changing the names of the syndromes to 'Factitious Disorders of the Adult' or 'Factitious Disorders by Proxy in Children.' That is how they are named in the Diagnostic and Statistical Manual of the American Psychiatric Association (1994).

The Boy, the Baron, and the Syndromes 141 Alternatively, I proposed that we call them the 'Asher' or 'Meadow' syndromes in honor of the perspicacious discoverers, notwithstanding their flagrant ignorance of history and lack of sensitivity about the baron (Shein, 1999). Since that time, others have come to agree with me (Randell, 2001; Wilson, 2001). The baron is part of medical history only because of the misuse of his name. Back to George Only while I was in full flight delivering my historical paper, did the question of George's medical ailments re-enter my mind. I must have seen Meadow's papers when they first appeared, but could not have connected them to George; his story did not begin until 1989. At Queretaro, it dawned on me that I had missed a clinical diagnosis of 'adult' MS, although George was just a boy when I first saw him. I do not think that his case can represent Munchausen-by-proxy syndrome. My contact with the boy, his mother, and his brother never led me to suspect that she did or even could encourage George to manufacture his symptoms, which were always related to pain as he described it. Various other features simply do not fit the criteria for MBP. On one occasion, the mother reported that George's pain had vanished after she called me and was told to bring him to my office right away to enable an examination during an episode. Instead, they came the following day when I was not there and had to be seen by a colleague, who found no abnormalities. When George was older, it was easy for him to know when I would not be in the office due to my regular hours: he could avoid me Wednesday afternoons and certain weekends. The same was true for the regular schedules of the surgeons. Looking back, I realized that my absences and those of other doctors who knew him may well have accounted for the treatments by relative strangers: the two unnecessary testicular operations, done by two different surgeons; and the consultations and operations of four different orthopedists. We can only wonder about the symbolic representation of his testicular problems at an age when identity formation stirs up gender issues. I now believe that George may be the youngest person ever to present with the adult form of MS. His symptoms started at age ten, while the youngest patients reported to date are in late adolescence. Thus, the present essay is the first case report of a child with adult MS. And I could not remember his name! Here this story began, and now I continue.

142 Max Shein

The History of the Psychiatrist On 21 February 2001, two years after the history conference in Queretaro, my nurse announced a phone call from a certain woman with a slightly familiar name. When I heard her voice, I recognized George's mother. Found at last! She was distraught. Her son, now twenty-two years old, had attempted suicide at the resort town of Acapulco. Even as we spoke, he was being transported to Mexico City. She anxiously begged me to put him in the hospital and find a good psychiatrist. Full of trepidation, I telephoned an eminent psychiatrist, who generously accepted the case. He displayed great interest in George and even listened politely to my belated diagnosis, which was anchored in my historical research. The psychiatrist hospitalized George with the diagnosis of 'acute psychotic episode/ He had been in Acapulco vacationing with friends, and it seemed that this event had been triggered by the consumption of great quantities of absinthe, an alcoholic drink made from the wormwood plant (Linares, 1996). Ever the dramatist, George told the psychiatrist that he had romanticized absinthe to his friends by associating it with the writers and artists whom he admired most: Edgar Allan Foe, Charles Baudelaire, Ernest Hemingway, and Toulouse-Lautrec. He recounted Oscar Wilde's explicit description of the feelings generated by absinthe: 'After the first glass, you see things as you wish they were. After the second, you see things as they are not. Finally, you see things as they really are, and that is the most horrible thing in the world' (Mann, 1994, 105-9). At that stage, George told his drinking companions that he was going to kill himself; immediately after, he lost consciousness. His friends called his mother and brought him back to Mexico City by car, a five-hour journey, during which George slept soundly until they reached the hospital. In his report, the psychiatrist described the whole episode as a psychotic reaction with grandiose feelings and suicidal ideation without manifest intent. After two days, George was discharged on medication, and he attended psychoanalytic sessions thrice weekly for three months. Then, he disappeared without notice. In several of the sessions, George confessed to the analyst that 'he had feigned sicknesses since he was a little boy, and in spite of the pain and suffering he was subjected to by so many laboratory tests, other invasive procedures, and four operations.' The psychiatrist kept these confessions from the parents, although he

The Boy, the Baron, and the Syndromes 143 held two sessions with them - separately, because they had divorced six years earlier when their son was sixteen years old. The father, who had been a successful economist, was unemployed. After the divorce, George lived with him at his grandparents' home. They shared a room, which George described as total disarray; he decided to return to his mother, a distinguished academic and author. His older brother went to medical school for a little while before switching to computer science, which provided him with a financially independent life. George was in his first year of cinematography studies and his mother had been paying his tuition; she had even bought him a car. While I was writing this essay, George's mother called to say that George had stormed out of her house after a 'terrible fight.' He had confessed to her for the first time that he had always feigned and exaggerated his sicknesses, as he had told the psychiatrist. She ordered him to leave and threatened to cut off his allowance unless he continued his analysis. He retorted that he was 'not a mental patient,' that his ailments were organic. Since he was again experiencing his old neurological symptoms with the short periods of amnesia, he would find a good neurologist by himself. George sold his car and, with a loan from his brother, went to study in Spain for a few months. But he soon came back to Mexico. Through his friends, his mother knows that he insists that the recurrent problems of his hands are of neurological origin, despite the contrary opinions of several neurologists who have examined him and performed many tests. Lately George is making regular trips to the state of Oaxaca in Mexico, where he participates in the religious ceremonies of the Indians. Since pre-Hispanic times, they have used hallucinogenic mushrooms, including Psilocybe zapotecorum (Argueta, 1994); those mushrooms, says George, 'make [him] feel much better.' A diagnosis - albeit belated - made thanks to my knowledge of history of medicine, and not through my clinical skills. A sad story, interesting, and almost amusing, thanks to the baron of Miinchhausen. But it is a story that does not seem to want to end; and if it does, the ending cannot be happy. Can it? NOTES 1 I prefer to use Munchhausen, as the baron himself always wrote his name. But the name has also been spelled Munchausen and Munchausen with

144 Max Shein such frequency in the medical literature that all forms must be considered acceptable. 2 A distinguished, contemporary descendant, an academic who used the title 'baron/ made headlines not long ago for successfully suing the Volkswagen company over his mother's death from slave labour in Auschwitz ('Mimchhausen's Hoifru,' 1998). BIBLIOGRAPHY American Psychiatric Association. 1994. Factitious disorders by proxy. Diagnostic and Statistical Manual (DSM-IV). Washington DC, 725-7. Argueta, Arturo (ed.). 1994. Atlas de las plantas de la medicina tradicional Mexicana. Mexico DF: Institute Nacional Indigenista Ed., vol. 3: 1450-1. Asher Richard. 1951. Miinchausen syndrome. Lancet, 260: 339-41. Bryk, M., and P.T. Siegel. 1977. My mother caused my illness: the story of a survivor of Munchausen by proxy syndrome. Pediatrics, 100: 1-7. Burger, Gustave A. 1964. Munchausen, Zeichnungen von Gerhard Oberlander. Munchen-Hamburg: Ed. Ellerman. Burman, David, and David Stevens. 1977. Munchausen family [Letter], Lancet, 2: 456. DeNoon, Daniel. 2002. Some kids cry out in language of illness, http:// my. webmd.com/content/article/21/1728_55062. Evans, Richard. 1979. Plantas de los dioses. Mexico DF: Fondo de Cultura Economica. Johnson, C. 2000. Abuse and neglect of children. In Nelson's Textbook of Pediatrics, 16th ed. Philadelphia: W.B.Saunders. Jones, B. 1986. Munchausen Hyeronimus Karl Friederich Baron Von. London: St Martin Press. Klotz, Irving M. 1992. Munchausen syndrome: hoaxes, parodies, tall tales in science and medicine. Perspectives in Biology and Medicine, 36: 139-53. Libow, J.A. 1995. Munchausen by proxy victims in adulthood. Pediatrics, 19: 1131-42. Linares, E. 1996. Artemisia absinthium. In Selection de plantas medicinales de Mexico. Limusa Ed., 26. Magill, Frank. 1989. Masterpieces of World Literature. New York: Harper Collins. Makar, A. 1989. Munchausen by proxy: father as perpetrator. Pediatrics, 85: 370-3. Mann, J. 1994. Murder, Magic and Medicine. New York and London: Oxford University Press. Mart, Eric G. 1999. Problems with the diagnosis of factitious disorder by proxy in forensic medicine. American Journal of Forensic Pathology, 17: 1-11.

The Boy, the Baron, and the Syndromes 145 Martinez, M. 1992. Las plantas medicinales de Mexico. Mexico: Ed. Botas, 133-4 Meadow, Roy. 1977. Munchausen syndrome by proxy. Lancet,2: 343-345. - 1982. Munchausen syndrome by proxy. Archives of Disease in Childhood, 57: 92-8. Miinchhausen, J.C.F. 1992. Aventuras del Baron de Munchhausen. Mexico, DF: Ed. Porrua. Miinchausen's Hoiftu. 1998. Forward/Forverts [Yiddish newspaper], 11 September, 13. Nueda, Luis, and A. Esptna. 1990.Mil libros. Mexico, DF: Editorial Aguilar. OED. 1979. The Compact Edition of the Oxford English Dictionary. Oxford University Press. Perez-Tamayo, Ruy. 2000. Serendipia. Mexico, DF: Siglo XXI Editores, 135-62. Randell, A. 2001. Changing Munchausen by proxy to fabricated or induced illness. Pediatric Notes, 25 (no. 42): 168. Raspe, Rudolph Erich. 1787. Adventures by Munchausen, 2nd ed. (cited in Justin G.Schiller, Catalogue 47-1996, New York, NY). - 1981. Las aventuras del baron de Munchausen, con Grabados de Gustave Dore. Madrid: Ed. Gaviota. Rusakow, L. 1994. Hemoptysis and Munchausen syndrome. Chest, 106: 130 Schreier, H. 1999. Munchausen by proxy. American Journal of Orthopsychiatry 63: 318-21. Shein, Max. 1999. Tergiversation de la historia: los sindromes de Munchausen. Boletin Mexicano de Historia y Filosofia de la Medicina, 2: 25-9. Strassberg, H.M., and W. Peuckert. 1984. Not Polle syndrome please [letter]. Lancet, 1: 166. Vaisrub, B. 1974. The immortal baron [editorial]. Journal of the American Medical Association (JAMA), 30: 90-1. Wilson, R.G. 2001. Munchausen by proxy.British Medical Journal, 323: 296-7.

Who Says You Have to Crawl before You Walk? Sudden Infant Death Syndrome,

Crawling, and Medical History HOWARD MARKEL

Although I began my career as a pediatrician at the age of twenty-six, I did not gain the critical 'hands-on' experience of being a parent until I was forty. Fortunately, both for my daughter, Bess, and for my patients, I learned a lot of medical history in the years between. I often tell my students that I like to think I am a better historian of medicine because I am a practicing physician, but the reverse is equally true: I am a better physician because I am an actively practicing historian. This essay is one attempt to explain why. Let's take an issue that has alarmed and concerned many parents in the Western world over the past three decades or so: 'crib death' or the sudden infant death syndrome (SIDS). Defined as the death of an infant from unexplainable causes, SIDS remains the most common cause of death for infants between the ages of one month and one year in developed countries around the world. Indeed, SIDS is an all-too-real representation of every parent's worst nightmare. For reasons that pediatricians have not yet identified, two to three out of every 1,000 babies die in their sleep. These infants are generally in excellent health, display no obvious sign of illness, and yet, at some point during the night, after his parents have lovingly put him down in the crib, he quietly and most unexpectedly dies. By day, in my pediatrics clinic, I always calmly discuss SIDS with new parents. As a father - like millions of others - I purchased a baby nursery 'walkietalkie' monitoring system and each night anxiously listened to the sounds of my infant daughter's breathing in and out. Nevertheless, a great deal of research on SIDS has been conducted. While we still do not know exactly what causes SIDS, we have identified several specific risk factors. These include: exposure to tobacco

Sudden Infant Death Syndrome, Crawling, and Medical History 147 smoke; mothers who lack prenatal care or who are under the age of twenty at the time of their first pregnancies; premature or low-birthweight babies; cold weather; heavy pillows and blankets; overheated rooms; and male gender, to name a few. But a critical risk factor that was elucidated in the early 1990s has to do with the sleep position of the baby. For decades, we pediatricians recommended placing infants to sleep in the prone position (i.e., on their stomachs) so that in the event the baby vomited during the night, he would not aspirate and suffocate. In fact, this was still the dogmatic teaching when I began my pediatrics internship in 1986, and I vividly recall spreading its gospel during my well-baby clinics each Tuesday and Thursday afternoon. It was around this point in the history of medicine (a grandiose way to begin a clinical observation, if ever there was one) that physicians and epidemiologists began to gather convincing evidence that putting babies down in the prone position might actually increase the risk of SIDS (Beal, 1991; Beal and Finch, 1991; Dwyer et al, 1991; Engelberts and de Jonge, 1990; Fleming et al., 1990; Guntheroth and Spiers, 1992; Mitchell et al., 1991). Hence, in 1992, the American Academy of Pediatrics (AAP) officially recommended that 'healthy infants, when being put down for sleep, be positioned on their side or back. (AAP, 1992). As more evidence was gathered that putting a baby down on her back conferred the lowest risk for SIDS, the back position became the preferred one for healthy infants (i.e., those without gastroesophageal reflux or specific upper airway anomalies that might predispose an infant to airway obstruction) (AAP, 1996). In the same pronouncement, incidentally, the Academy's Task Force on Infant Positioning and SIDS recommended that parents encourage 'a certain amount of "tummy time"' while the infant is awake 'for both developmental reasons and to help prevent flat spots on the baby's head' (figure 19). But I am getting ahead of the story. By 1994, American pediatricians were marching in step to a new party line of baby advice. Most famously, the American Academy of Pediatrics and the United States Public Health Service orchestrated a widely successful campaign called the Back to Sleep program (get it?), which instructed parents on how to put their babies down to sleep as well as avoid other risk factors that appeared to contribute to the incidence of SIDS (figures 20, 21). Similar programs were developed in other Western nations, such as Great Britain, Canada, New Zealand, and Australia.

148 Howard Markel

For more information on sleep position for babies and reducing the risk of SIDS, contact the Back to Sl&tp campaign at: 1-8M-505-CWB *"** 31/2A32, Bethesda, MD 20892 Fax: {301)496-7101 Web site: www.nichd.nlh.gov

Back to Sleep campaign sponsors include: National institute of Child Health and Human Development Maternal and Child Health Bureau American Academy of Pediatrics * SIDS Alliance Association of SIDS and Infant Mortality Programs

National Institute of Child Health and Human Development

MIH Pub. No. 02-7040 September 2002

19 Tummy Time' poster, U.S. Department of Health and Human Services.

Sudden Infant Death Syndrome, Crawling, and Medical History 149

20 'Back to Sleep' poster, U.S. Department of Health and Human Services.

150 Howard Markel

21 'Back to Sleep' poster, U.S. Department of Health and Human Services.

Sudden Infant Death Syndrome, Crawling, and Medical History 151 The results were striking, to say the least. By 2001, the percentage of American babies sleeping on their backs had increased to more than 70 percent (up from a mere 20 percent before the Back to Sleep campaign began). More important, the incidence of SIDS in the United States over the same period of time decreased by more than 40 percent. So what does all this have to do with the developmental milestone of crawling? Well, quite a lot. As I indicated earlier, my personal development both as a pediatrician and as a parent parallels this fifteen-year progression in SIDS prevention. After graduation from medical school in 1986, I began my internship in pediatrics and completed my residency in 1989 and a fellowship in general pediatrics and adolescent medicine in 1991. While a clinical instructor, I pursued a PhD in the history of medicine. These years marked a simultaneously busy and rewarding period in my life, but in order to keep my doctorly and scholarly roles straight, I pointedly removed my white lab coat each and every time I left the hospital and crossed the street to the seminar room where my graduate school classes took place. In 1993, I joined the faculty of the University of Michigan Medical School as an assistant professor of pediatrics. To complicate the mixture, at roughly the same time as I was writing my thesis, which would become a book on the history of quarantines and epidemics, I was also composing both a textbook of general pediatrics (Markel et al., 1992) and a baby- and childcare book for parents with the late Frank Oski (Markel and Oski, 1996). Frank was a human dynamo who always generated new ideas and projects on how to improve children's health. Among the many aphorisms and pearls of wisdom that he imparted to me, the one I value (and quote) the most is his motto 'Controversy is better than no versy.' And on 7 June 2000,1 became the proud father of a daughter, Bess Rachel Markel. Not only did my personal history coincide with the decline of SIDS, thanks largely to the 'Back to Sleep' campaign, it also coincided with a new finding in developmental pediatrics. Now, there's a funny thing about the developmental milestones of infancy that is not always clearly communicated from pediatrician to parent. Milestones - such as the baby's first social smile, holding up the head unsupported, or mastering the ability to pick up a small object - are important windows into how the baby is growing and developing, but they rarely unfold with the chronological precision that most babycare advice books seem to suggest. For example, many babies begin to walk by twelve to fifteen months of age, but some begin earlier and quite a few take longer. All

152 Howard Markel

these babies fall into a broad range of normal even if the parents of the 'late-walkers' tend to stay awake nights worrying that this so-called (but hardly real) 'delay' is a harbinger of some terrible malady. Such a predicament is all too familiar to anyone who has logged in time at a pediatrician's waiting room. Amid the back copies of People or Time magazine and the collection of toys in desperate need of retirement is a gaggle of parents actively engaged in the game of child comparison. 'My son is in the ninetieth percentile for both height and weight/ a proud father might boast about his one-year old. 'My daughter began speaking three-word sentences at fourteen months/ says an ebullient mother. But frequently, behind these boasts hides a need for reassurance that one's child is entirely normal, if not a bit ahead of the curve. To be sure, some delays in developmental or physical milestones really do matter, particularly when they are severe: a three-year-old boy who has yet to utter his first word or a two-year-old girl who has not sprouted her first tooth. But one issue which pediatricians (and their advice books) need to explain better is that for the overwhelming majority of healthy babies, most of these milestones are merely approximate guideposts, rather than absolute destinations to be reached at precise times. The milestone of crawling is a splendid example of this cultural dilemma. For much of the twentieth century, authoritative books on babycare advice, in multiple editions - ranging from L. Emmett Holt's The Care and Feeding of Children (Holt, 1894) to Benjamin Spock's The Common Sense Book of Baby and Child Care (Spock, 1946), to more recent examples of the genre, including the American Academy of Pediatrics manual Caring for Your Baby and Young Child (Shelov, 1994) and my own contribution to this glutted market - all told parents to expect that their baby would begin to crawl sometime between six and nine months. Some experts even suggested that learning to crawl at this age was essential for the baby's other developmental milestones, ranging from her first steps to her first words. Over the past decade, more and more parents have noticed that their babies are simply not turning over (from their backs to their stomachs) at the same chronological point in time as did babies of the past, or, for that matter, they are no longer crawling at six to nine months when the popular baby books say they should. In fact, over the past five or more years, many pediatricians have noted a growing number of babies who never crawl at all and who progress directly from sitting to toddling.

Sudden Infant Death Syndrome, Crawling, and Medical History 153

22 Bess, at age 7-8 months, not crawling. Private collection of Dr Howard Markel.

During the winter of 2001, I, too, noticed that my eight-month-old daughter Bess refused to crawl in any way, shape, or form. In all respects, she was entirely healthy, and, if I might impose the authority of 'professional opinion/ she was markedly advanced in terms of development when compared with her peers (figure 22). Further, she did not particularly enjoy being placed on her stomach (i.e., 'tummy time') when we played together. But instead of being alarmed or troubled that something was terribly wrong with my daughter (or, for that matter, the babies I was then

154 Howard Markel

seeing in my clinic who also refused to crawl), the historian in me kicked into high gear. Recalling the discipline's dictum that history is the study of change over time, I began to reflect on my decade and a half of clinical practice in search of the Rosetta Stone that might unlock the cause of this 'epidemic' of noncrawling. As I pondered this question without much success, my wife, Kate, who is not a physician but is perhaps more qualified for being an astute mother, immediately came to the right conclusion: 'Bess isn't crawling because we place her on her back all the time. The problem is that this position does not allow her to practice pushing herself up or moving in a way that might help her to master crawling.' Eureka! Despite their prevalence in a plethora of Hollywood representations of medical practice, Eureka-like moments are, sadly, all too rare in a physician's life. Unlike the movies, we rarely experience these flashes of insight. Instead, medical or clinical discoveries are often the result of weeks or months or years of careful observation and verification. But when they do occur, it behooves the physician to pay close attention. Thankfully, I was confident in Kate's wisdom and seized upon her epiphany. Soon after, I went to the medical library to search the literature for some confirmation. I could, of course, have begun such a search on my computer, given the miraculous access to the Internet and online medical indexes that cite every comma, period, and colon that we doctors presently produce in the name of research. Yet, there remains something entirely romantic and energizing about a search through the stacks, the pulling down of big, fat volumes from the groaning shelves, and the rapid leafing through their pages for a precise entry, that compels me to make these trips. Within an hour, my labor was nicely rewarded with authoritative answers. As it turned out, Kate was not the first person to make this observation, even if her predecessors and their findings were unknown to me until I took the time to look them up. In fact, two major studies conducted in the late 1990s, one in Great Britain and the other in the United States, scientifically verified the observations that many other pediatricians and parents were making at the time (Dewey et al., 1998; Hunt et al., 1997). Specifically, babies really are not turning over as early as they once did. And crawling, if it comes at all, now occurs several months later than it used to. The reason? These studies demonstrate that it is an entirely benign but unexpected and unintended consequence of the public health cam-

Sudden Infant Death Syndrome, Crawling, and Medical History 155

paign teaching parents to put babies on their backs in order to prevent SIDS. There is absolutely no health consequence to this developmental change. Indeed, these babies (like my daughter Bess) are normal in every other way; they even master the skills of the other milestones on time: sitting up on average at six months; walking roughly at twelve to fifteen months. They just don't seem to want to crawl. In Britain, researchers realized that they had a perfect opportunity to ask whether putting babies on their backs would affect their subsequent development. Together with infant development experts, they embarked on a long-term study that was designed to follow nearly 15,000 infants from birth until adulthood beginning in 1990, just as Britain unveiled its Back to Sleep campaign. One of the study's lead investigators, Dr Peter Fleming of the University of Bristol, explained that initially doctors were somewhat wary about the SIDS prevention advice and still worried about the risk of a baby aspirating his or her vomit while sleeping in such a position. Many specialists suggested that babies lie on their sides. But gradually, their fears were allayed, and data accumulated to tie sudden infant death syndrome to sleeping on the stomach. Virtually all physicians then began urging parents to keep babies on their backs. As the British study tracked this change, a striking difference was discovered. In the early 1990s when most babies slept on their stomachs, they turned over and crawled when the babycare advice books said they should. Within the last five years, however, as parents uniformly began putting babies on their backs, more and more babies did not roll over or crawl on schedule, and increasing numbers never crawled. When I called Dr Fleming to ask him about these findings, he gave a measured and rather historically informed explanation: 'These babies are normal by every other measure. But in medicine, whenever you introduce something new, you worry that it might cause problems. But this did not happen with the Back to Sleep campaign. When the cohort was eighteenth months old, we looked again at developmental milestones and there was absolutely no difference in these children's development.' Similarly, in the United States, a group of pediatricians studied 351 babies in Washington, DC, and its suburbs and found the same thing. The babies who slept on their backs started crawling, on average, at about nine months, and about a third of them never crawled. More important, the back-sleepers and the stomach-sleepers started walking at the same age - on average when they were about a year old.

156 Howard Markel

Even though these studies were published in Pediatrics, one of the premier American journals of children's health, in 1997 to 1998, this subtlety still eludes many parents and not a few of the pediatricians. As Dr Mary Ellen Davis, the lead author of the Washington-based study, lamented to me during a telephone conversation, 'Language skills are far better markers of developmental delay in babies. But, like it or not, many parents are focused on these physical milestones - when they roll over, when they crawl, when they walk/ To me, the clear problem was that the critical message of this benign change in infant development was not being adequately communicated to practicing pediatricians or parents. More specifically, few of us seemed to be asking the essential question, Who says you have to crawl before you walk? And, perhaps more important, if it does not matter, how do we let people know about it? Newspaper reporters are especially fond of the old adage that journalism is the first draft of history. Although I have long appreciated this axiom as a practitioner of historical writing who often uses newspapers as primary sources, over the past several years I have come to value its wisdom even more as a contributor on health issues for the New York Times. As a result, the social and intellectual construction and deconstruction of crawling versus noncrawling seemed to be a worthy topic to write about for a wide audience. Armed with a sheath of notes, data, quotes, and medical reports, I made my way to the newsroom of the Times one spring morning to meet with my editor, Barbara Strauch. While pitching this story about crawling to her, I could see her pupils dilate with excitement and interest. 'Howard/ Barbara said, 'if you can write this quickly, I think it's front-page news/ I rejoined, 'Well, I am not so sure it's front-page news, but it certainly is an interesting story/ The hard-boiled editor rapidly replied 'Look, you do your job, you let me do mine. Write it up, I'll handle where the story is placed/ Later that afternoon, I was assigned to work on the text with Gina Kolata, the Times's science correspondent, and over the next forty-eight hours, thanks to e-mails, telephone calls, and faxes, we hammered out the story and arranged for photographs of one of my patients and his mother in Ann Arbor, Michigan. True to Barbara's word, the story, 'Research Relieves Concern for Babies Who Do Not Crawl,' graced the front page of the Sunday, 29 April 2001, edition of the New York Times as well as about 500 other newspapers around the country who subscribed to the New York Times News Service. The following morning, the story led ABC's Good Morning America and NBC's Today. In the months that

Sudden Infant Death Syndrome, Crawling, and Medical History 157 followed, it made the web pages of baby care advice and was slated for inclusion in all of the updated versions of standard advice books that serve as bibles for parents (Kolata and Markel, 2001). All in all, it was an exciting weekend, and for many months thereafter I smiled to myself at the realization that this 1,200-word article of reporting probably did more good and reached more people than all of the words, articles, and books I had researched and written in the previous two decades. Most important, parents and pediatricians alike now openly discuss the issue of 'delayed' crawling calmly and without worry, at clinics across the United States every day. We do urge parents to give their babies some 'tummy time' in order to stimulate the physical skills that might lead to crawling. But the overall message is that crawling is no longer the important milestone we once thought it to be. Indeed, it is, as my students glibly note, 'history.' BIBLIOGRAPHY AAP. 1992. American Academy of Pediatrics Task Force on Infant Positioning and SIDS. Positioning and SIDS. Pediatrics, 89: 1120-6. - 1996. American Academy of Pediatrics Task Force on Infant Positioning and SIDS. Positioning and Sudden Infant Death Syndrome (SIDS): Update. Pediatrics, 98: 1216-18. Beal, S. 1991. Sudden Infant Death Syndrome related to sleeping position and bedding. Medical Journal of Australia, 155: 507-8. Beal, S.M., and C.F. Finch. 1991. An overview of retrospective case-control studies investigating the relationship between prone sleeping position and SIDS. Journal of Paediatrics and Child Health, 27: 334-9. Davis, B.E., R.Y. Moon, H.I. Sachs, and M.C. Ottolini. 1998. Effects of sleep position on infant motor development. Pediatrics, 102: 1135^0. Dewey, C, P. Fleming, J. Golding, and the ALSPAC Study Team. 1998. Does the supine sleeping position have any adverse effects on the child? II. Development in the first 18 months. Pediatrics, 101: e5-13. Dwyer, T., A.-L.B. Ponsonby, N.M. Newman, and L.E. Gibbons. 1991. Prospective cohort study of prone sleeping position and Sudden Infant Death Syndrome. Lancet, 337: 1244-7. Engelberts, A.C., and GA. de Jonge. 1990. Choice of sleeping position for infants: possible association with cot death. Archives of Disease in Childhood, 65: 462-7. Fleming, P.J., R. Gilbert, Y. Azaz, et al. 1990. Interaction between bedding an sleeping position in the Sudden Infant Death Syndrome: a population based case-control study. British Medical Journal, 301: 85-9.

158 Howard Markel Guntheroth, W.G., and P.S. Spiers. 1992. Sleeping prone and the risk of Sudden Infant Death Syndrome. Journal of the American Medical Association (JAMA), 267: 2359-62. Holt, L. Emmett. 1894. The Care and Feeding of Children: A Catechism for the Use of Mothers and Children's Nurses. New York: D. Appleton and Co. Hunt, L., P. Fleming, J. Golding, and the ALSPAC Study Team. 1997. Does the sleeping position have any adverse effects on the child? I. Health in the first six months. Pediatrics, 100: 1-9. Kolata, G., and H. Markel. 2001. Research relieves concern for babies who do not crawl. New York Times, 29 April 2001, Al. Markel, H., and F.A. Oski. 1996. The Practical Pediatrician: The A to Z Guide to Your Child's Health, Behavior, and Safety. New York: Scientific American Books/W.H. Freeman. Markel, H., J.A. Oski, F.A. Oski, and J.A. McMillan. 1992. The Portable Pediatrician. Philadelphia: Hanley and Belfus/Mosby-Yearbook. Mitchell, E.A., R. Scragg, A.W. Stewart, et al. 1991. Results from the first year of the New Zealand Cot Death Study. New Zealand Medical Journal, 104: 71-6. Shelov, Steven P. (ed.). 1994. The American Academy of Pediatrics Caring for Your Baby and Young Child. Birth to Age 5. New York: Bantam Books. Spock, Benjamin. 1946. The Common Sense Book of Baby and Child Care. New York: Duell, Sloan and Pierce.

Making a Diagnosis

This page intentionally left blank

An 'Appallingly Sudden Death7 Explained Seventy-Six Years Later T. JOCK MURRAY

My story of how history can inform the present is circular rather than linear. It began with a plaintive request of a surgeon in 1909 asking if any doctor could help him explain why his patient unexpectedly died while being prepared for a surgical procedure. No one responded. My publication of a response seventy-six years after the original question was posed solved two recent unexplained deaths. But I am getting ahead of myself. The Historical Research Historians are used to noting connections from various projects on which they are working, and this happened in this case. About twenty years ago, I was interested in how Joseph Lister's antisepsis had become incorporated in surgical practice in Maritime Canada, where there were both vocal advocates and detractors. There were also some very peculiar adoptees who had their own methods that included drinking carbolic acid. From my earlier research on the history of Dalhousie Medical School, I knew of Dr John Stewart (1848-1933), who had been a leading advocate of antisepsis and my predecessor as dean (figure 23). Among the faculty, Stewart was renowned for his previous role as one of the 'bearded Scots' who were Lister's surgical assistants, first in Edinburgh, and later in London. George Cheyne always claimed that Stewart had been Lister's favorite (Murray and Murray, 1984). Another of Lister's assistants, Sir St Clair Thompson, described Stewart as a tall, handsome, dark Highlander, stalwart and dignified, gracious, with courtly manners and soft, clear speech, and the most devoted apostle of the great master (Murray, 1993). I had a personal interest in Stewart as a

162 T. Jock Murray

23 Dr John Stewart (1848-1933). Private collection of Dr Richard Kahn.

An 'Appallingly Sudden Death' Explained Seventy-Six Years Later 163

century earlier he returned from London to the small county seat, or 'shiretown/ of Pictou, Nova Scotia, where I grew up, and opened a hospital a few houses away from my home, a building that still existed when I was a child. A childhood friend lived there and I played in the rooms where Stewart operated. Also he later became dean of Medicine at Dalhousie Medical School, and I was the dean at the time I was doing this research, and walked by his portrait each day as I entered my office. Stewart was expected to have a prominent career as a successful surgeon in London; despite the pleading of his father and of Lister, however, he moved back to his native province in 1879 to set up surgical practice in Pictou. There he took responsibility for his two unmarried sisters, ran an active practice, opened his own hospital, and became known as one of the best surgeons in eastern Canada. A talented photographer and watercolorist, he was also admired for his beautiful prose, particularly in his recollections of time with Lister (Stewart, 1912). Accomplished at lacrosse, rugby, and hiking, he started an athletic association in Pictou, just as he and his brother had once organized a similar society while students at Dalhousie. Stewart later moved to Halifax, developed a busy practice, and in 1905 was elected president of the Canadian Medical Association. He commanded the Dalhousie Stationary Hospital in Europe during the First World War, was mentioned in dispatches, and was made a Companion of the British Empire. During these years, he was awarded honorary degrees by McGill, Edinburgh, and Dalhousie. His appointment as dean of Dalhousie Medical School came in 1919; however, only a few years later, he was writing to the president of the university to say that he was slowing down, having trouble with his vision, hearing, and memory, which left 'appalling voids in [his] trains of thought/ Such was his difficulty hearing the senate meetings that he attended only as a matter of form, saying that he did not vote because he could not follow the discussions. Presumably the university valued his fame, since he remained a figurehead dean for a further ten years. Stewart told the university that the secretary of the faculty, Dr Hattie, was making the daily decisions and his role was merely to sign the diplomas at the end of each year. (For those of us who have served as deans of medicine, it is sobering to note how little capacity might be required!) Despite his many activities, his fame was always connected to his earlier association with Lister; until his death in 1933, he would be referred to as 'Dr John Stewart, surgical assistant to Joseph Lister/ as if this were his full name.

164 T. Jock Murray

Increasingly interested in the relationship to Lister, I read Stewart's papers and lectures, and the many recollections of his Edinburgh and London days. Fortunately, his lecture notes survive. They indicate that he carried Lister's message to Maritime physicians with evangelical fervor. As Lister had done, he exhorted his colleagues to understand the germ theory as the basis for controlling postoperative infections and to utilize correct methods of antisepsis. He also lectured on the proper way to administer anesthesia. In the early twentieth century, the cult of 'the great man' was prominent in medicine, and Lister was among the most revered. The admiration for Stewart was to some extent a reflection of his brush with greatness. Acknowledging his teaching of Lister's concepts, a colleague once claimed that Stewart had taken the gates that Lister had unlocked and thrown them wide open. The Case In the course of reading Stewart's papers, lecture notes, and his thirty publications, I came across an unusual article in the Maritime Medical News of 1909, in which he described a patient who had died suddenly while being prepared for a urological procedure (Stewart, 1909). Shocked and puzzled by what had happened, Stewart published the case, appealing openly to his colleagues for their ideas about what went wrong and why the man had died. We may demand honesty and humility in our medical practice, but physicians rarely display their ignorance, mistakes, and failures in print, asking for helpful comment and criticism. How many of us would stand so naked to the world after the unexplained death of a patient - an event clearly related in some way to a procedure that we had carried out at the time? Stewart's appeal did not shrink from the possibility of iatrogenic responsibility for this death. Had the doctor killed his own patient? No one replied. The case involved a fifty-year-old farmer who was being treated for a urethral stricture. Previous dilatations had been successful, but they were becoming more difficult. In his office, Stewart attempted to pass a bougie (or dilator), but stopped when he met with oozing of blood and small clots. He then injected into the urethra 'a drachum or two' of a solution of three grains of eucaine, eighteen drops of adrenaline solution, in three and a half ounces of normal saline. Another attempt to pass a dilator was unsuccessful, so the doctor made arrangements to admit the man to the Halifax Infirmary. The next day the patient seemed

An 'Appallingly Sudden Death' Explained Seventy-Six Years Later 165 to be rested, comfortable, and cheerful, and he was passing urine. Nevertheless, Stewart decided to try to pass the bougie again as it might avoid his needing an emergency procedure during a busy farming season. Stewart injected the eucaine and adrenaline solution, intending that it should remain for some minutes to have effect. He was about to leave the room when the patient suddenly spoke out. 'It did not act this way before/ he said, raising his hand to his forehead. Stewart asked if he had pain, and the farmer answered, 'No, but it seems to be going to my head.' Stewart recorded: I was quickly at his side and felt his pulse. It was extremely rapid. I asked if he felt sick. There was no reply. His head and eyes turned to the right and there was a single convulsive movement and the pulse suddenly stopped. At the same moment, his face, which had been a natural color, perhaps slightly flushed, became cyanosed and the veins became turgid. I at once began artificial respiration, but the enormously distended veins called for venesection, and I had no lancet or knife of any kind by me.

Stewart called a nurse and another physician. Using a scalpel, he opened the basilic vein at the elbow, but little blood flowed. He then opened the jugular vein in the neck, but again only a small amount of dark blood trickled out and then stopped. He kept up artificial respiration for over an hour and gave a hypodermic injection of strychnine and rectal injections of hot black coffee - all in vain. Stewart sadly concluded, "There was not the slightest sign of life from the moment the pulse ceased so abruptly.' An autopsy was not done. Perhaps it was requested and refused; it seems that the doctor would have wanted one. Stewart was left to ponder what had caused 'this appallingly sudden death.' At first, he wondered if the local anesthetic and adrenaline had had something to do with it, because of the timing of events. But he concluded that they were not the cause. In asking his colleagues for answers, he suggested that it could have been due to what he called a 'pulmonary embolus/ or a clot on the lung. The concept was old, but Stewart's name for that condition seems to have been relatively new: in 1892, Osier had written of 'pulmonary apoplexy' without the word 'embolism' (which he used elsewhere) to describe infarction of the lung.

166 T. Jock Murray The Solution

I was struck by Stewart's plaintive request of 1909, which had gone unanswered, and when reading about acute and sudden deaths in pop stars from cocaine and crack, I wondered about the eucaine and adrenaline as a cause, even though that was dismissed by Stewart. Without discounting Stewart's suggestion of a pulmonary embolus, or other common causes of sudden death, I was suspicious of the time relationship to the administration of eucaine and adrenaline into a urethra which had been traumatized, bleeding, and raw from so many attempted dilations in the previous twenty-four hours. Those anesthetic agents were expected to have local effects, but would they not have been absorbed easily into the bloodstream through the inflamed urethra? Not being a clinical pharmacologist, I sought information about local anesthetics and their complications. In particular, I looked for their effects on inflamed tissues, and for pharmacological characteristics of eucaine, a drug that is no longer in use. I concluded that the sudden death of the farmer was due to the absorption of eucaine hydrochloride (properly known by the daunting name of 2,2,6-trimethyl-4-peperidinol benzoate [ester]; and also called beta-eucaine HCL or benzamine). It is a derivative of cocaine, which we know can result in sudden circulatory and respiratory failure (Resnick, Kestenbaum, and Schwartz, 1976; Stenlake 1954). Although weaker than cocaine, eucaine produces the same pharmacologic effects, but with less stimulation of the adrenergic system. Cocaine and cocaine-like drugs, such as eucaine, are absorbed from all sites of administration, including the mucous membranes. For this reason, people snort cocaine. Absorption is enhanced by local inflammation. When applied directly to tissues, cocaine and eucaine block the initiation and conduction of local nerve impulses; however, when they are absorbed into the blood stream and the whole body, they greatly stimulate the brain and central nervous system. In 1954, Stenlake compared eucaine with cocaine: when absorbed systemically, both drugs cause feelings of well-being, euphoria, but sometimes a feeling of depression. In acute poisoning, stimulation of the central nervous system leads to excitement, restlessness, anxiety, and confusion. The pulse is rapid and respiration irregular. The face turns ashen gray in cyanosis. The rapid course progresses to headache, chills, nausea, and abdominal pain. The pharmacological authorities, Goodman and Gilman, wrote, 'Indeed there is a form of acute cocaine intoxication that results in

An 'Appallingly Sudden Death' Explained Seventy-Six Years Later 167 almost immediate death, the patient often collapsing and dying before the physician realizes what has occurred. This type of poisoning probably results from abnormally rapid absorption' (Gilman, Goodman, and Gilman, 1980, 377). Once thought to be relatively safe by the growing drug culture, cocaine has caused a number of sudden deaths, particularly after intravenous doses. Its dangers are now well known to the younger generation, who mourn many of their favorite athletes, actors, and rock stars. Less frequently, sudden death due to cocaine can also occur after absorption through oral or nasal mucous membranes, and, I was emboldened to suggest from my reading of Stewart, through the inflamed urethral tissues. In a footnote to his case history, John Stewart exonerated eucaine and adrenaline for responsibility in the farmer's sudden death. Later, he learned from a colleague of a similar report that had appeared a few years earlier in the British Medical Journal. This sudden death had occurred within three minutes of a urethral administration of half a drachm of a 10 percent solution of cocaine (Tivey, 1906). That patient also had a traumatized and bleeding urethra. Stewart was not entirely convinced that the local anesthetic had been the problem: in contrast to the numerous cases of 'misadventure' with cocaine, he commented that eucaine was 'practically safe.' However, whatever the cause of his patient's sudden death, he conceded that the inflamed urethra was somehow involved. Seventy-six years after Stewart asked for an explanation for his patient's 'appallingly sudden death,' I published the suggestion that it was indeed due to the sudden absorption of eucaine, causing a cocainelike cardiac and respiratory collapse (Murray, 1985). Fittingly, the article appeared in the Canadian Medical Association Journal, which had succeeded the Maritime Medical News in 1911, only two years after Stewart published his appeal. Two Further Cases Solved To this point we have a historical research project uncovering an unsolved problem and providing a retrospective answer. But the story then came full circle when my own published essay solved two cases that had occurred more recently. First, I heard from pharmacologists who suggested that the adrenaline, which had been administered together with the eucaine, would have aggravated the collapse. Then

168 T. Jock Murray

came two unusual letters from readers of my essay, both specialist physicians, who reported that my solution likely explained mysterious, sudden deaths that had occurred in their own family members. One wrote that his uncle had died in circumstances similar to those described in Stewart's case. This man was being prepared for a urethral dilation, and the urologist left the room for a few moments, returning to find his patient dead. The uncle's sudden death remained unexplained until my story appeared; so similar was it to Stewart's case that the nephew felt that he now understood what had happened. Similarly, the second letter came from a urologist, who wrote that he now understood the sudden death of his aunt who was undergoing bronchoscopy. She expired within minutes of local anesthetic being sprayed into her throat. Coincidentally, her name was Stewart. The latter physician wrote that he was going to bring the report for discussion to the next urology journal club to provide some educational points for the staff and residents about this danger, and to learn if his urological colleagues had encountered other sudden deaths from local anesthetics. So the circle continues. Medical history research so often links us with colleagues from another era in ways that feel very personal. In this experience, I came to know Stewart better as a person, and felt him reaching out from the past, pleading for help so that he could protect his future patients from a tragic, puzzling event. As I passed his portrait on the way to the dean's office, I always gave him an admiring and respectful nod. BIBLIOGRAPHY Connor, J.T.H. 1994. Listerism unmasked: antisepsis and asepsis in Victorian Anglo-Canada. Journal of the History of Medicine and Allied Sciences, 49:

207-39. Gilman, A.G., L.S. Goodman, and A. Gilman (eds.). 1980. Goodman and Gilman's Pharmacological Basis of Therapeutics, 6th ed. New York: Macmillan 1980. Murray, T.J. 1985. John Stewart's case of sudden death: a reassessment. Canadian Medical Association Journal, 133: 432-3. - 1993. Basking in the shadow: the relationship between John Stewart and Joseph Lister. Paper read at the Annual Meeting of the Canadian Society for the History of Medicine, Ottawa. Murray, T.J., and S. Murray. 1984. The history of Dalhousie Medical School. MeDal. Dalhousie Medical Alumni Bulletin. Osier, William. 1892. Principles and Practice of Medicine. New York: Appleton.

An 'Appallingly Sudden Death' Explained Seventy-Six Years Later 169 Resnick, R.B., R.S. Kestenbaum, and L.K. Schwartz. 1976. Acute systemic effects of cocaine in man, a controlled study by intranasal and intravenous routes. Psychopharmacological Bulletin, 12: 44-5. Stenlake, J.B. 1954. Observations on the stereochemistry of benzamine. Journal of Pharmacy and Pharmacology, 6:164-6. Stewart, J. 1909. A case of sudden death. Maritime Medical News, 21: 446-7. - 1912. Personal recollections of Lord Lister. Canadian Practitioner and Review, 37: 270-7. Tivey, C.B.F. 1906. A case of cocaine poisoning. British Medical Journal, 2: 868.

One Blue Nun JACALYN DUFFIN

On a day in May 1986, I was seated in a vast conference room of a Rochester, New York, hotel, about to make my speaking debut as a historian at the annual meeting of the American Association for the History of Medicine. A stylish woman leaned across the row of besuited men to hand me a message and murmured, 'It's urgent, doctor.' I went cold. My children? My husband? What could have happened? Getting paged at a meeting is a fairly regular occurrence for a physician - but not when she is scarcely in practice and far from home. I could feel those beside me stirring with new interest. Somebody needed that newcomer; is she a 'real' doctor? I dialed the vaguely familiar Toronto number. "llo, m'dear/ No names needed; it was my hematology mentor, Dale Dotten - a colleague, yes, but also a good friend. Understanding, even approving of my foray into the past, he was the kind of clinician who would invite you to percuss Traube's space and then ask, 'Who was Traube?' Had someone designated him to be a bearer of bad news? He sounded calm, almost cheerful, and I relaxed. 'Dale! what's this about?' 'Got a great case for you.' 'I'm at a history meeting! And you haven't referred me a patient in years.' 'Didn't need to before. But this patient has to be seen in Ottawa.' Having just finished my PhD with Mirko Grmek in France, I was slowly trying to find a place back in clinical practice. The Ottawa General Hospital had granted me consulting privileges. I covered the service when the other blood doctors were away. Sometimes, I read bone marrows or helped in teaching. But I didn't maintain an office.

One Blue Nun 171

'Why not ask one of the regular attendings?' 'She's special and I think she needs you. Had a terrible time finding you though/ 'I'm not surprised. What's the story?' 'She's from Sri Lanka and was brought on a six-month minister's permit by her brother who is a physician. When she arrived at the airport, she was so sick - breathless and weak with chest pains - that they brought her right to the hospital.' This news made me nervous. My emergency skills were worse than rusty. 'We stabilized her, of course. But she needs to be in Ottawa for a diagnostic work-up.' 'That's where her brother lives?' 'Nope. That's where her convent is. She's a nun, and' - I could hear him grin - 'she's blue!' 'Blue?' 'Yep. Methemoglobinemia. Perfect case. Classic. You'll like her.' I groaned. This patient was going to tax my mundane expertise, and she would surely expose my inadequacies to the very physicians I was trying to impress. My hematology teacher had reached deep into my historical present to summon me back to blood. Blue Blood Met-hemoglobin-emia is a long name for a small but lethal change in hemoglobin, the protein that carries oxygen and carbon dioxide between the lungs and the tissues. Hemoglobin is stuffed inside red blood cells, which are ingenious but brainless little bags that look a lot like wee cough candies; they are designed to cart around the hemoglobin and protect it from harm. Hemoglobin is amazing. Nobel prizes have been awarded to the scientists who unraveled the awesome beauty of its structure and function. It is made up of four, long, winding proteins (two pairs), each curled around a 'heme' unit, which contains porphyrin and a single atom of iron. Unlike the usual, more boring transport proteins, hemoglobin cleverly alters its ability to pick up or release oxygen, depending on the quantity available. How? It changes shape! And the shape change is reflected in its color. With oxygen, hemoglobin in the arteries is brilliant red; without, it is dark purple, almost black - making our veins appear blue beneath the skin. In the healthy lungs, where oxygen is

172 Jacalyn Duffin

abundant, hemoglobin readily grabs every molecule it can find. In the tissues where oxygen is consumed - contracting muscles, beating hearts, thinking brains, and digesting guts - hemoglobin happily releases its oxygen cargo and picks up the waste product, carbon dioxide. Then, it goes back to the lungs again for another exchange, over and over for 120 days until the red cell dies; its hemoglobin is broken down to be excreted or recycled into new blood cells. What exactly is methemoglobinemia? It is a tiny, one-electron alteration to the iron atom in the 'heme' portion of hemoglobin. Normally, the hemoglobin iron has a positive valence of two (Fe++). If a single electron is removed, in a process called 'oxidation/ the valence shifts to three (Fe+++). This change occurs all the time, in everyone, as part of the humdrum wear and tear of red cell existence. Usually, it is easily corrected by special enzymes lurking in the red cell; they rush in to fix the 'oxidative injury' (as scientists like to call it) by donating an electron to the iron atom - a process called 'reduction.' But if the repair system cannot keep up with the stress - because of too much oxidation, or too little reducing power - then methemoglobin accumulates, and the whole patient turns blue. That subatomic change can be devastating: hemoglobin no longer carries respiratory gases as well as it once did, and the entire molecule is unstable. It can simply shrivel up - salt out - into a useless clump, visible under a microscope as a dark, angular blob, called a Heinz body. Red cells containing these clumps are quickly gobbled up by the spleen, the blood count falls, and the urine darkens with the by-products of dead cells. Anemia sets in and a vicious downward spiral is established: poor oxygen transport, dying red cells, anemia, jaundice, kidney problems, worse oxygen transport, even death. No wonder people with methemoglobinemia feel horrible. They look blue, partly because they have less bright, red, oxygenated blood, and mostly because methemoglobin itself is a muddy blue-brown. People can be born with an inherited tendency to develop methemoglobinemia, or they acquire it from an oxidant, such as a toxin, a food, or a medication. Given the right electron-hungry poison, anyone could have it. In 1945, two blue babies were found to have been poisoned by nitrate-contaminated well water in Iowa (Comly, [1945] 1987). And then there is the famous 1950s sleuthing story by Berton Roueche: on a single day, eleven blue men turned up in emergency rooms all over New York City having accidentally 'salted' their oatmeal with nitrite at the same greasy spoon (Roueche, 1954, 87-99).

One Blue Nun 173 But even 'safe' foods can be a problem. For example, fava beans pack an oxidative punch; susceptible people who eat them will be sick. For centuries, Mediterranean cultures were aware of a condition called 'favism': victims suffered pain, red urine, breathlessness, and blueness. We now know it as methemoglobinemia caused by an enthusiastic meal of fava beans (with or without 'a nice Chianti'). Persons who develop favism have an inherited lack of one of those important enzymes needed for hemoglobin maintenance and repair, G6PD (glucose-6-phosphate dehy dr ogenase). As much as I admired hemoglobin, I never did like the sticky, chemical details of its metabolism, the inherent complexity of which is only aggravated by eager but intimidating iron zealots who insist that it is simple. By the time I faced Sister Lucia in the clinic at Ottawa General, however, I had reread and practically memorized the relevant sections of Clinical Hematology, master work of my hero, Winnipeg-born Jew, Maxwell Wintrobe. We already knew that the nun had methemoglobinemia; my task was to find out why. Blue Nun Sister Lucia was gracious and calm. She looked much younger than her fifty-three years, well nourished. Beautiful, in fact. Her white habit and veil contrasted strikingly with the dark skin of her south Asian home. Her flesh was firm and slightly cool, but under the deep, natural tan, she was blue. No doubt about it: nailbeds, inner eyelids, mouth, and tongue, all were a dusky mauve. People who are very cold can look blue too: the muscular fibers in the oxygen-rich arteries of their skin contract, making the red blood seem to disappear and leaving the bluish blood of veins to predominate. But the blueness of cold is usually 'peripheral' at the fingertips and toes, not 'central' in the mouth and tongue, as I could see here. Sister Lucia was the blue of someone who had been asphyxiated, or of a child with an unrepaired hole in his heart. Yet, she seemed incongruously well, and her breathing was easy now. I learned that she was a nurse-midwife who had served in various capacities in the missions of her order in Sri Lanka. She had had two serious illnesses in her past: a breast tumor, possibly cancer, that had been operated; and a painful blistering skin disease, called dermatitis herpetiformis. Both problems had resolved. The last bit of history was intriguing. People with dermatitis herpetiformis are sometimes given a drug called Dapsone, which is famous for being an oxidant, like fava

174 Jacalyn Duffin

beans. So strong an oxidant is Dapsone that patients must be tested for methemoglobin before and during treatment to make sure that they do not develop the problem. Sister Lucia had indeed taken Dapsone for her skin in the past, and she had regular checkups. I was surprised to learn that Dapsone's dangerous reputation had extended to Sri Lanka, where it made demands on limited laboratory facilities. If her blood had been affected at the time of the skin cure, it had not been sufficient to stop treatment. Her last Dapsone tablet had been seven months earlier, in October 1985. Being a nurse, she knew the risks. In any case, she had never been blue before, and she was taking no medicines now. Blueness aside, the physical examination was normal. When she arrived in Toronto, Sister Lucia had been dangerously ill: her blood counts were low and rapidly falling, her urine was red, and her methemoglobin level was 40 percent - in other words, almost half the blood in her body was affected. Dr Dotten had taken samples to store for later analysis, but she needed immediate treatment with a reducing agent and transfusions. By the time she reached Ottawa, a good portion of the blood circulating in her body had once belonged to somebody else. I would have to wait a few weeks until the transfused cells died away to ensure that the tests would reflect her own blood. I prescribed vitamins to build her recovery. Over the next few weeks, Sister Lucia lived at her convent and came to the hospital clinic for tests. She was the sole patient in my fledgling practice, and I was eager to sort out her problem. Her methemoglobin level was now 6 percent, much better than it had been in Toronto but still too high. Sometimes it climbed up to 20 percent, only to fall back again; but she did not need transfusion. Sure enough, under the microscope those tell-tale Heinz bodies of crumpled hemoglobin were still easily visible in many of her red blood cells. I ran the tests for the abnormal hemoglobins that cause the condition from birth. Normal. I ran the tests for the red cell enzymes that are most often deficient in people with favism, including G6PD. Normal. I did general screening tests. Normal. What could it be? Why was this nun blue? The books listed dozens of substances that could act as oxidant poisons, especially nitrites. I wondered about nitrite-containing toxins dyes, fertilizers, herbicides, pesticides - that might have been used or sprayed on the lands around her mission. Could one of these agents contain a strong oxidant? Sister Lucia acknowledged that controls on chemicals might be lax in her country, but she knew of nothing specific. Quite reasonably, she pointed out that no one else in her sphere had turned blue.

One Blue Nun 175

In June, I called Dr Dotten to report on my failure. He had tested the brother, looking for a hereditary problem: his blood was normal, although a harmless chemical in the urine suggested that his red cells might break down more quickly than average. Was it related? We couldn't tell. We agreed to consult Dr J.F. Prchal, a red cell expert in Montreal. Tests for enzymes focus on specific enzymes; in other words, the doctor has to imagine which enzyme might be deficient before ordering the test. Since there are now dozens of known enzymes, dozens of tests are possible. Most hospitals do not have the expertise, nor can they afford to stock all possible tests; 'sell-by' dates on these products would demand replacement of reagents many times over before they might be used. Dr Prchal agreed to run enzyme and hemoglobin studies in his laboratory. He also suggested that we try to look for toxins or drugs in her blood. 'I really don't know if it's possible, but could you get a Dapsone level?' he asked. 'A Dapsone level? You mean that she might have taken the drug, when she said she didn't.' 'Well, as a nurse, she had access to it, didn't she?' 'But she took it earlier and wasn't sick/ 'Anyone might be sick if they took enough of it. Look, people sometimes do strange things to get attention. Anyway,' he continued, 'even if she does have an enzyme deficiency of some sort, you still don't know why it is causing her a problem now, when it didn't cause a problem before.' Sister Lucia went to Montreal. It was simpler to send the blood inside the patient, and I wanted to challenge Dr Prchal's suspicions with a direct encounter. She also saw a dermatologist, who reassured us that her skin was fine. He too was unable to explain her blood problem. In his report, which was sent to her brother, Dr Dotten, and me, the dermatologist stated the obvious: these spells could be triggered 'by taking her Dapsone.' As expected, our laboratories were unable to measure Dapsone directly. The director piously reminded me that such a test was scarcely needed, since doctors could easily monitor Dapsone indirectly by measuring methemoglobin. A special laboratory might be able to run a general screen for oxidants. Who knew? Maybe some agricultural chemical was responsible after all. I began to think we were missing something important. What if Sister

176 Jacalyn Duffin Lucia, being from a distant part of the world, was lacking an enzyme that had yet to be described? How would we identify a missing but unknown enzyme, when no test for it had yet been devised? Thinking historically, I wondered how the first red cell enzyme had been imagined. Scientists cannot find something - even by accident - if they do not first suspect that it exists. Blue Soldiers All hematologists know that Ernest Beutler discovered that important red cell enzyme, G6PD, back in the 1950s. American soldiers developed methemoglobinemia while taking a drug, primaquine, that was to protect them from malaria. I quickly located Beutler's original work and the test for predicting the condition in the Journal of Laboratory and Clinical Medicine. He and his colleagues, Raymond J. Dern and Alf S. Alving, published seven articles on this research in that journal between August 1954 and January 1955. Historical skills helped for finding this series of articles, but they helped much more in imagining that it must exist at all. Beutler's papers were brilliant, and his method disarmingly simple. While taking the malaria drug only some soldiers - mostly black males - had developed methemoglobinemia; others stayed well. Beutler reasoned that the problem had to be located either in the red cells or in parts of the body normally responsible for breaking down and eliminating drugs, such as the liver, kidney, or spleen. In the latter case, if the patients could not excrete the drug, each dose could add to an accumulating overdose. By studying the survival of patients' cells transfused into normal people and vice versa, Beutler was able to prove that the affected individuals could eliminate the drug: the problem had to be in their red cells. To determine who might have the problem and who might not, Beutler took blood from normal people and from patients who had once been sick but were healthy again and no longer taking the drug. He added an oxidant, like Dapsone, to all the blood samples and set them aside for four hours. Then he counted how many Heinz bodies formed in each sample. Normal cells made a few Heinz bodies, but the cells of people who had been sick made many more (figure 24). Beutler concluded that the red cells of the sick people lacked something - an enzyme - that normals must possess. Soon after, he described G6PD. The deficiency of G6PD is more prevalent in blacks and certain

One Blue Nun 177

24 The small dots inside the clear red blood cells are Heinz bodies, which indicate denatured hemoglobin. The top image shows blood of a person lacking G6PD after a four-hour exposure to an oxidant; the bottom image shows the blood of a normal person. Many more Heinz bodies are visible in the cells that lack the enzyme (Beutler, Dern, and Alving, 1955, 43).

178 Jacalyn Duffin

Mediterranean populations, who include the people with favism. Men suffer much more frequently than women because the gene is carried on the X-chromosome. Women are affected only when they are unlucky enough to inherit two abnormal genes. Beutler's work unleashed a torrent of new discoveries. Once scientists could imagine that the red cell was equipped with a little chemical repair kit for fixing wounded hemoglobin, the number of useful items in the toolbag multiplied quickly. Some enzymes did not act on hemoglobin, but rather on sugars that generate energy to keep the process working. Many new enzymes and their variants were found by Beutler himself and his colleagues at the Scripps Clinic in La Jolla, California. If Dr Prchal's tests turned out to be normal, we could ask Beutler for an opinion. History in the Lab The crucial demonstration from 1955 was so simple that I decided to try it on Sister Lucia's blood in our own lab. It was positive. Aha! Something was wrong with her blood. She must be lacking an enzyme that our lab, at least, was unable to find. I waited anxiously to hear back from Dr Prchal. Maybe it was an enzyme that he could identify. Maybe, however, she lacked something previously unknown and I would write the first report on whatever new enzyme it was: 'Duffinase.' But alas, enzyme deficiencies - unlike Hodgkin's disease - are not named for their discoverers; nor - unlike Lou Gehrig's disease - are they named for patients. With irrefutable logic (and brazen historical insensitivity), enzymes are named for the chemical reactions over which they preside. Hence, G6PD. In the meantime, I saw Sister Lucia regularly. She felt well, but continued blue. She was anxious to go home and work, and I worried that she might be lonely in Ottawa. Her brother lived far away, and the nuns at the convent spoke only French. She accepted her lot without complaint and seemed grateful for, and genuinely interested in, my efforts on her behalf. With slight amusement, she also seemed to have sensed my grandiose dreams of discovery. At the end of June, when she was clearly out of danger, Sister Lucia went to visit her brother. On the way to and from his home, she passed through Toronto, stopping to see Dr Dotten each time. On both occasions, he sent a blood sample to the lab, still looking for specific toxins. After the second visit, he called to warn me that she was very upset. She

One Blue Nun 179

had seen her brother's copy of the dermatologist's letter with its bland remark about how taking Dapsone could cause the problem. She was deeply hurt and now believed that we doctors did not trust her. He tried to reassure her, and pointed out that all possible causes of her problem had to be considered. The dermatologist knew that some people took the medicine without prescription in fear that the painful skin condition might come back. In July, Dr Prchal reported that all his tests were normal. One of his technologists, he said, thought that Dapsone was the most likely explanation. Undaunted by this news, I told him excitedly about how I had found and repeated Beutler's original procedure. Since the test was positive, Sister Lucia could have a previously unknown enzyme deficiency. He acknowledged that he had examined the blood only for enzymes that were already known, and he agreed that we should contact Beutler himself. For a near-has-been hematologist, the prospect of calling up Beutler was exciting indeed. If Sister Lucia was missing some sort of enzyme, we had to explain why it was a problem now, when it had not been before - especially when she had been on Dapsone. I imagined that she might have had an immune reaction against one of her own enzymes, triggered perhaps by another transient illness - a viral infection or, I feared, a return of her breast cancer. I wasn't sure if things actually could work that way, but it had been a long time since I had been so motivated to delve into the literature. I announced to my colleagues that I was willing to present a seminar on the case. I checked her immune function, but it was normal too. A few days later, Dale Dotten rang to say that the lab at his hospital had conducted what they called a 'benzo' screen on the two blood samples collected as she passed through Toronto en route to her brother's home. As a result, they managed to perform the Dapsone measurement that we had not thought possible. The second sample, taken on her way back to Ottawa from her brother's home, was negative. But the first sample told us that on her way out to see her brother, Sister Lucia had had Dapsone in her blood. My hopes for a career-making discovery were crushed. Of course, our rendition of the historic test had been positive! Her blood had not been pure; it was already immersed in oxidizing poison. A normal person's test would appear positive too, if she were to swallow Dapsone and not tell. We spoke on a three-way call, Montreal, Toronto, Ottawa. 'Maybe

180 Jacalyn Duffin

there's been some kind of mistake/ Other chemicals might give the same response, but the most likely culprit was Dapsone. 'What's a normal Dapsone level anyway?' 'Seems reasonable to ask, since we never measure it in anyone else.' 'Zero, of course! No one has any Dapsone in them unless they take it.' 'Better not contact Beutler.' I cringed. How embarrassing. 'What should I do now about Sister Lucia?' We talked back and forth. She had to be told - confronted - of course. My good colleagues seemed delighted not to have to deal with it. Looming loudly over our conversation was the obvious but unspoken question: 'Would a nun lie?' Why Would a Nun Lie? Sometimes, to avoid painful situations at work or home, people will feign illness, or harm themselves. Once, I had interrupted an unhappy woman 'generating a fever' in herself by furiously rubbing the bulb of a thermometer on a sheet while the nurse was out of the room. Malingering and its obsessive version, Munchausen syndrome, had been studied many times, and predisposing personalities described (see Shein in this volume). But what could be wrong here? Sister Lucia was eager to go back to work, and she certainly was not having much fun in Canada. Maybe she had longed to see her brother again. Possibly her religious order was too strict to permit travel for any reason other than health. I felt foolish and abused for having accepted her story. But I fretted about how to break the news. What would she do? Would she deny it with the great dignity that was her style? Would she accuse me of lying? Would she be angry? Would she collapse in despair with some dreadful confession of personal anguish? She had dutifully kept her appointments at the clinic, but now the situation seemed to demand more delicacy: I must make a convent call. That night, 12 August 1986, I watched the CBC television news, too preoccupied with the anticipated awkwardness to pay much attention. Suddenly, I was riveted by the images on the screen: a crowd of 150 dark people in tattered clothes, their terrified, white eyes gleaming out from a murky Newfoundland shore. They were from Sri Lanka, the announcer said. And they had risked their lives in pathetic boats to escape the violence in their homeland, where rebels waged guerrilla war on the ruling class. The event would be front-page news for days. Here was a capital explanation for Sister Lucia's strange behavior.

One Blue Nun 181

War. Terrorism. Brutality. Many clerics had perished at missions in the unstable third world. For most of us, fear would be an adequate, even respectable reason for leaving. But how could a devoted nun yield to that basic instinct without seeming to betray her vows? Better to be sick. I had no idea if she were Tamil or Sinhalese. Could anyone tell the difference by looking? Would it matter? And what would her being a Christian mean to the terrorists? I began to feel better about the looming convent call. A tiny sister received me at the entrance and ushered me into a bright, spare room, where Sister Lucia was waiting. The diminutive nun brought tea and arrowroot cookies, and withdrew, silently pulling the door behind her. For a few moments, we poured and sugared and nibbled and made small talk. Then I launched into my speech. No need to accuse; I would simply state the truth. 'Sister Lucia, we have some new reports back. It seems that you had a substance like Dapsone in your blood/ 'But how could that be, doctor? I haven't taken that drug for many months/ T don't know how else it could get into your system,' I said firmly, 'And the lab was certain; it was definitely an oxidant, very like Dapsone. It was there in mid-June and gone by the end of the month/ She looked thoughtful, but not in the least upset or angry. If this nun is a liar, I thought, she is a fabulous actor too. I plunged on. 'Last night, I saw that people are fleeing your country, because of the violence there. It occurred to me that you might be in some kind of danger at your mission. Perhaps you would like to stay here. I'm sure something could be arranged/ She smiled slowly. 'There have been problems in my country for a long time,' she said. 'You cannot predict or escape acts of terrorism, but I am prepared for that. I love my work, and I want to go home. I came here because my brother was worried about me. If you cannot learn anything more about my blood, perhaps it is time to return/ Was she proposing to escape, having now been 'caught'? Or was she offended and dealing obliquely with my implicit suggestion that she had lied? I could not tell. Her response was quiet and plausible. 'Sister, I don't even know if you are Tamil or Sinhalese. I have only just realized that these distinctions are important. Maybe it is dangerous for you to be a Christian too. Perhaps you should not go back while there are troubles/

182 Jacalyn Duffin

She seemed not to be listening. T just can't understand how that Dapsone could be in my blood. I haven't taken it since last October. Maybe something like it is in the fertilizers or insecticides. You know, after you asked me those questions about the chemicals, I remembered that the state did some kind of spraying in the fields near our mission.' She did not admit to taking Dapsone. And whether or not she had, follow-up was still needed. She agreed to come to the clinic for checkups, as she had in the past. Over the next few weeks, her methemoglobin level fell to zero, her blood returned to normal, and she was no longer blue. I prepared to present her case for rounds. Whatever its cause, methemoglobinemia provided a good opportunity to review the structure and metabolism of my favorite molecule, and my knowledge of iron had never been sharper. I chose a snappy title, 'Hematologist as Sleuth: The Case of the Blue Nun/ and, of course, I provided glasses and a bottle of Liebfraumilch for refreshment. Rounds always work better with a patient. Sister Lucia knew the event was important for me, and she came to listen and answer questions from the audience. As planned, she left about half-way through rounds when the case history was complete. Later, when the Dapsone results appeared on the screen, a keen resident piped up from the back of the room, 'But she's a nun. Would a nun lie?' I was prepared. In reviewing the literature, I had found a few research papers on malingering and attention-seeking behavior in religious people. A 1981 study of nearly 200 people seen by psychiatrists following episodes of self-poisoning or attempted suicide found that manipulative behavior seemed to occur independently of religious attitudes (Neal, 1981). It turns out, not surprisingly, that nuns are not saints; they are human, with the same fears and needs as others. By her vocation, Sister Lucia may not have been immune to lying or attention-seeking behavior. When confronted with the evidence, however, she had not reacted like most other malingerers: she did not grow angry, nor did she deny the accuracy of our tests, and most unusual of all, she did not disappear. She had even been at the seminar only minutes before, and was well aware of what I would be telling the audience. The rounds went very well. I sensed that the Ottawa hematologists had more confidence in me, despite my historian's credentials and limited experience. My story has two endings.

One Blue Nun 183 Ending No. 1 With Dapsone and methemoglobin out of her system, Sister Lucia prepared to go home. I was sorry to see her leave. Dr Dotten had been right: I liked her and would miss her gentle, philosophic outlook. She had taught me more about blood and brought me safely back to hematology. When he paged me out of that history meeting, he may have been prompting that return, but neither he nor I could have predicted that history would become an instrument of hematology. Behind each lesson learned lay an intriguing but unanswered question that demanded more exploration. With the surprising arrival of the refugees, I could reckon with the reasons for her self-inflicted wound, and I could even understand why a nun might have lied. Ending No. 2 At Sister Lucia's last clinic visit, Beutler's inspired study sprang to mind once again. Free of Dapsone, her blood ought to behave like that of anyone else. The original test for an undiscovered enzyme should now be normal. We repeated it. But to my surprise, it was positive once again. She must have an abnormality in her red cells, one that had been present all along - Dapsone or no Dapsone! Feeling somewhat vindicated, I heard that the brother also continued to display the slight abnormality in his urine. He and his sister were anxious to know as much as they could to avoid a relapse of her blueness. More to reassure them both prior to her departure, we finally asked Beutler for an opinion. He obligingly waived his fee. This time, we kept the patient in Ottawa and couriered a specially treated sample of blood to southern California. In a covering letter, I was careful to inform him that our repeat of his 'elegant' 1955 test remained positive after the supposed Dapsone ingestion had ceased. By January 1987, Beutler reported on the tests for some thirty enzymes; they were normal. However, for reasons of cost, he had not pushed the investigation to seek a previously unreported enzyme. Many substances could cause the changes we had seen; given the history, however, Dapsone was the most likely explanation. With oxidant in her blood during her illness, further investigation was inappropriate. He would see her in person, if she wished, but he saw little point in the

184 Jacalyn Duffin expensive exercise. In any case, Sister Lucia had already returned to Sri Lanka. I was still fixated on the 1955 test. Beutler let me down gently in his report, by saying that the original test was rather crude (by current standards) and that too many things could affect it. Of course, he could not reinvent the wheel for a patient who was already known to have taken an oxidant. And in fairness, academic considerations over the plight of one blue nun contrasted sharply with the serious health concerns of the U.S. army. But what if he had given up back in 1955? Would he have discovered G6PD? I am still intrigued by one passage in his report about a 'mild decrease' in the ATP levels of Sister Lucia's red cells: 'There are racial differences in normal red cell ATP levels, and I am not sure what the normal range should be for Ceylonese/ So, a genetic condition making her susceptible to methemoglobinemia could still be possible. As for a trigger, by the mid-1990s, reports of poisoning from combined therapies or from agricultural chemicals in the Indian subcontinent were circulating on the Internet and elsewhere (Fairbanks, 1994; Van der Hoek et al, 1998). Did Sister Lucia's shame at reading the dermatologist's letter cause her to abandon her secret habit of 'doing Dapsone'? Had my feeble confrontation somehow convinced her that the personal risks of continuing were too high? Or did the waning of some mysterious substance in her blood merely coincide with these events in a person who has an as-yet-undefined enzyme deficiency? I never knew. And although I might understand why, I have never been able to believe that the blue nun lied. Seventeen years later, Sister Lucia is well at age seventy, and has had no further problems with her blood. Until her retirement six years ago, she continued to teach in mission work for her order in Sri Lanka, a beautiful country still torn with strife. BIBLIOGRAPHY Beutler, Ernest, Raymond I. Dern, and Alf S. Alving. 1955. The hemolytic effect of primaquine. VI: an in vitro test for sensitivity of erythrocytes to primaquine. Journal of Laboratory and Clinical Medicine, 45: 40-50, esp. 43. Comly, Hunter H. [1945] 1987. Landmark article Sept 8,1945; Cyanosis in infants caused by nitrates in well water. Journal of the American Medical Association (JAMA),257: 2788-92.

One Blue Nun 185 Fairbanks, Virgil R 1994. Blue gods, blue oil, and blue people. Mayo Clinic Proceedings, 69: 889-92. Neal, C.D. 1981. Religion and self poisoning. International Journal of Social Psychiatry, 27: 257-60. Roueche, Berton. 1954. Eleven Blue Men and Other Narratives of Medical Detection. Boston: Little, Brown. Van der Hoek, W., F. Konradsen, K. Athukorala, and T. Wanigadewa. 1998. Pesticide poisoning: a major problem in Sri Lanka. Social Science and Medicine, 46: 495-504. Wintrobe, Maxwell M, et al. 1981. Clinical Hematology, 8th ed. Philadelphia: Lee and Febiger.

This page intentionally left blank

Prescribing the 'Right' Treatment

This page intentionally left blank

William Withering's Wonderful Weed RICHARD J. KAHN

A physician ought not to be ashamed to inform himself, tho by the meanest [most humble] people, of Remedies confirm'd by experience. By this means, in my opinion, the Art of Physick grew up by degrees, that is by amassing and collecting observations of the several particular cases one by one, which being all put together, make one entire body. Le Clerc, Baden, and Drake (1699), 339

Almost thirty years ago I attended a postgraduate course at Pennsylvania Hospital, arguably the first hospital in the United States. The original 1751 section of the hospital was undergoing renovation, and the old medical library, which had opened in 1762, was closed. I was so disappointed that the librarian took pity on me and let me use the library (figure 25). The door closed behind me, and I was alone with the ghosts of people like Benjamin Franklin and Benjamin Rush. I scanned the shelves, chose an original edition of William Withering's 1785 book, An Account of the Foxglove, and read this classic for the first time while sitting in a chair that had probably been used by some of the first teachers at the first medical school in the United States, which had opened in 1768. Withering's book arrived at Pennsylvania Hospital shortly after the end of the American Revolution (1783). I can picture the physicians reading and discussing the new book in that library two hundred years ago. Many American physicians at the time were hungry for the latest medical literature from Britain. On 16 September 1783, Benjamin Rush, an elite physician, teacher, scientist, and signer of the Declaration of Independence, wrote to Dr William Cullen, one of his teachers in

190 Richard J. Kahn

25 Historic Library of the Pennsylvania Hospital. Courtesy of the Pennsylvania Hospital, Historic Collections, Philadelphia.

William Withering's Wonderful Weed 191

Edinburgh: 'What has physic [medicine] to do with taxation or independence? ... One of the severest taxes paid by our profession during the war was occasioned by the want of a regular supply of books from Europe, by which means we are eight years behind you in everything' (Rush, 1951, vol. 1, 310). I had known about Withering's book before my visit to Philadelphia, but being alone in that grand old library and reading the actual copy read by Rush and others two centuries ago was a moving experience, which lingered as a powerful memory. That memory helped me to place new medications in perspective and to care for a particular patient who, I felt, needed 'William Withering's Wonderful Weed.'1 The Case of Thomas Doubting I practice internal medicine at Penobscot Bay Medical Center in Rockport, Maine, 180 miles up the coast from Boston. On a July day about twentyfive years ago, I was called to the emergency room to attend to one of my summer patients, Thomas Doubting. He was complaining of substernal chest pain and shortness of breath, had a rapid, irregular heart rhythm, and was refusing medical treatment. I groaned, knowing that this previously fit, sixty-one-year-old would be a real management problem. A graduate of Harvard Business School, Mr Doubting was a highly successful executive who was accustomed to being in charge and had always been absolutely opposed to taking medicines of any kind. He believed that exercise and vitamins would prevent and cure all medical problems. His wife, the daughter of a homeopath, shared his skepticism about drugs. Their reservations certainly had the approbation of distinguished physicians and philosophers. Perhaps they had read Oliver Wendell Holmes, who wrote: Throw out opium ... throw out a few specifics which our art did not discover ... throw out wine, which is a food ... and I firmly believe that the whole materia medica, as now used [I860], could be sunk to the bottom of the sea, it would be all the better for mankind - and worse for the fishes. (Holmes, 1911, 202-3)

Or, possibly, they shared William Osier's skepticism of remedies available in the early twentieth century as revealed in his famous saying, 'The desire to take medicines is one feature which distinguishes man, the animal, from his fellow creatures' (Osier, 1945,125). Or maybe they

192 Richard J. Kahn knew George Santayana's aphorism on a more universal form, of doubt: 'Scepticism is the chastity of the intellect, and it is shameful to surrender it to the first comer' (Santayana, 1923, 69). A month earlier, Mr Doubting had visited the Lahey Clinic, near his home in Boston, complaining of palpitations and shortness of breath. He was suffering from angina associated with a rapid, irregular heart rhythm, known as atrial fibrillation. He had chosen Lahey Clinic for its good reputation; however, rather than comply with the suggestions of hospitalization and medications, he left for a vacation in London. Though not obese, he went on a diet, lost ten pounds, and took vitamins, but his shortness of breath increased, and his squeezing chest pains were now occurring up to twelve times a day. In July, he returned from London to his vacation home in Maine. The chest pressure and several episodes of awakening in the middle of the night gasping for breath led to the emergency room visit. He was complaining of severe angina and his heart was racing irregularly at 150 beats per minute. A chest X-ray showed that his heart was enlarged. The clinical diagnosis was coronary artery disease with mild congestive heart failure. That is, the arteries, which fed his heart, were partially blocked, which, with the rapid irregular rhythm, was causing the angina pains in his chest. Fluid was beginning to back up into his lungs and would eventually cause swelling of his legs. Two hundred years ago this syndrome would have been called 'dropsy.' Doubting could die quickly. As anticipated, he refused any medicine, and he also refused an attempt at converting his heart rate to a normal rhythm by electronic cardioversion. But I was ready for him. Primed by our earlier encounters and armed with a little medical history, I had developed a new strategy while walking to the emergency room. Standing by his stretcher under the bright lights, I told him the story of a woman in England, two hundred years ago, who had brewed a weed tea that seemed to help 'dropsy' and 'rebellious palpitations' just like his. The Story Told to Doubting Born in Wellington, Shropshire, in 1741, the son of an apothecary, Dr William Withering had obtained a medical degree from the University of Edinburgh in 1766 (figure 26). In 1775, he attended a lady with seemingly incurable dropsy and noticed that she appeared to benefit from drinking an herb tea that 'had long been kept a secret by an old Shropshire woman' (Withering, 1785, 2). Various secondary sources

William Withering's Wonderful Weed 193

26 William Withering holding a withered sprig of digitalis. Drawn and engraved by W. Bond, based on a portrait of Withering by C.F. Breda, in the possession of William Withering, Esq. Source: Boston Medical Library in the Francis A. Countway Library, Harvard School of Medicine, Boston.

194 Richard J. Kahn

refer to Withering's 'old Shropshire woman' as a 'gypsy/ a 'grandame of Shropshire' (Jacobs, 1936), a 'botanist and pharmacist' (Wallis, John, and Wallis, 1988), a 'rural herbalist' (Acierno, 1994, 712), a 'Mrs. Button' Qohansson, 1999, 39), and 'Old Mother Hutton' (Hurd-Mead, 1938, 202, 45; Willius and Dry, 1948, 91, 312). At the time of this writing, I am unable to confirm that the name of the 'old Shropshire woman' was 'Hutton'; it may well be a twentieth-century embellishment of the foxglove story (Krantz, 1973; Krinkler, 1985). Withering was already an established botanist, as well as a physician, when he made this consultation. His interest in botany had been stimulated by a young lady, Helena Cooke, who enjoyed painting flowers. From 1768, a willing Withering brought her blooms, and the couple married in 1772. Four years later and a year after the famous consultation described above, he published his Botanical Arrangement of All the Vegetables (1776). This book represents the first use of the binomial nomenclature of Carolus Linnaeus to describe the flora of Great Britain and the first English-language attempt at a complete scientific classification and description of British plants. The old woman's tea was 'composed of twenty or more different herbs,' but Withering was sure that 'the active herb could be no other than Foxglove' (Withering, 1785, 2). Perhaps he reached this conclusion because he recognized that the tea sometimes caused Vomiting and purging,' which were known to be the side effects of foxglove. In his botany, he had described the plant and its toxic effects: 'A dram taken inwardly excites violent vomiting' (Withering, 1776, vol. 1, 376). Foxglove grew 'like a weed throughout the midlands and western counties of England' (Roddis, 1936, 98). It had been used in folk medicine for centuries; however, its diuretic properties had not been appreciated (figure 27). Withering credited Leonart Fuchs (1501-66), German physician and botanist, as the first to notice and refer to foxglove in his herbal compendium De Historia Stirpium Commentarii Insignes (1542, 516). The foxglove flower looks like a thimble or like the fingers of a glove, and it is variously called Witches' Glove, Fairy Thimbles, Bloody Finger, or Fingerhut (thimble) in German, among other folk names (OED, 1971). Fuchs continued the allusion to the fingers by assigning it the botanical name digitalis, and he described it as a purgative and emetic (KinneSaffran and Kinne, 2002). In the framework of sixteenth-century humoral theory, however, patients and physicians would see the elimination of fluids as ridding the body of an excess or a foreign evil.

William Withering's Wonderful Weed 195

27 Foxglove (Digitalis purpurea) in Withering's original work, 1785. Boston Medical Library in the Francis A. Countway Library, Harvard School of Medicine, Boston.

196 Richard J. Kahn As I explained to Mr Doubting, Withering's major contribution was to place foxglove (digitalis) on a 'proper scientific footing' (Lee, 2001). From 1775 to 1785, he studied 163 of his own patients and case records written by other physicians using foxglove. He found it to be a powerful diuretic, developed a 'standard' preparation of dry leaves, and commented on the use of foxglove for dropsy, asthma, and other diseases. He noticed, for example, that it did not help the dropsy associated with diseases of the ovary. Withering observed that foxglove has 'a power over the motion of the heart' (Withering, 1785, 192). But, at the time, there was no good reason to think that the plant was acting directly on the heart (Estes, 1986,141-63, esp. 143). Withering wrote: if the pulse be feeble or intermitting [as in atrial fibrillation], the countenance pale, the lips livid, the skin cold, the belly soft and fluctuating, or the anasarcous [swollen] limbs readily pitting under the pressure of the finger, we may expect the diuretic effects [of foxglove] to follow in a kindly manner. (Withering, 1785, 189-90) Foxglove was introduced into the Edinburgh Dispensatory by 1783. Two years later, Withering published his Account of the Foxglove to call attention to the abuses of the drug; he emphasized the importance of dose and explained the benefits and risks of its use. On 10 October 1799, William Withering died of pulmonary consumption (tuberculosis) at fifty-eight years of age. Shortly before his death, a visiting friend had quipped, 'the flower of English physicians is indeed Withering' (Roddis, 1936, 197). Miss Sarah Hoare, whose father had been treated with digitalis, is thought to have written the following poem in 1818 (Wray, Eisner, and Allen, 1985, 136); it was printed in subsequent editions of Withering's Botanical Arrangements (Estes, 1979, 169; Norman, 1985): The foxglove's leaves, with caution given Another proof of favouring Heav'n Will happily display; The rapid pulse it can abate; The hectic flush can moderate And blest by Him whose will is fate, May give him lengthen'd day. Withering's decade-long experience with the benefits and side effects of foxglove transformed what had been a folk medicine into a valued

William Withering's Wonderful Weed 197 medical therapy. He was performing the eighteenth-century version of clinical trials. At that time, dropsy was a primary diagnosis in patients who shared certain symptoms and signs, such as swelling of the limbs and abdomen, shortness of breath, and wheezing. Many years would pass before physicians could separate similar clinical pictures representing disease of the kidney, liver, or heart, and more than a century and a half would go by before medicine saw the beginning of controlled clinical trials, as we know them today (Kaptchuk, 1998). Chemists, pharmacologists, and clinicians searched for the active ingredient in the powdered leaves of the purple foxglove that could strengthen the heart action and slow the heart rate (Estes, 1990, 68; Whitfield, 1985). Once it was isolated, they had to determine if, in fact, the drug favorably altered the natural course of the disease. Digitalis still enjoys a place in our armamentarium for atrial fibrillation and heart failure (Eichhorn and Gheorghiade, 2002). Back to Doubting After listening intently to a short version of this story, Mr Doubting decided to accept William Withering's Wonderful Weed, now known more commonly as digoxin, because it is a 'natural' remedy. His heart rate decreased, his angina resolved, and he went home. I must point out that twenty-five years ago, as today, digitalis might not have been the drug of choice in this situation, but it seemed the best choice if we were to help this man in a way that respected his wishes. Firm in his resolve, Doubting never would accept any other cardiac interventions. Four years later, he dropped dead as he walked along a beach in Tortola, British Virgin Islands - the manner of death that he wanted. Scientists, pharmacologists, and cardiologists are still trying to understand the mechanism of action and the clinical indications for the use of that beautiful plant (Acierno, 1994, 711-18; Estes, 1979). We now know the chemical structure of digoxin and that it inhibits the cellular membrane 'sodium pump' (Hauptman and Kelley, 1999). But there remain many unanswered questions regarding its ability to strengthen and slow the heart, and its appropriate use in heart arrhythmias ('rebellious palpitations') and heart failure ('dropsy'). Careful clinical studies must be done to eliminate bias and the possibility that the results occurred merely by chance. The interest in digitalis/foxglove continues unabated after two hundred years. A search of the National Library of Medicine database of English-language articles from 1993 to 2003 revealed the

198 Richard J. Kahn

following number of citations: foxglove, 105, digitalis, 864, and digoxin, 2987. Certainty is unattainable in medicine, and we will always have much to learn. Some of the herbal remedies in use today will be medically adopted, but it will take careful analysis of the chemical composition, standardization of doses, and clinical trials to prove their safety and efficacy (Goldman, 2001). Physicians and patients should remain skeptical of these preparations as well as, perhaps, those of the pharmaceutical industry in general. One of William Osier's aphorisms is applicable to the care of Thomas Doubting: 'Care more particularly for the individual patient than for the special features of the disease' (Bean, 1950, 93). Mr Doubting was well educated and articulate, with ready access to medical care. The various therapeutic options were presented to him on a number of occasions, but he chose to reject them. Whatever its mechanism, digitalis helped to keep him alive and comfortable for four good years, and medical history helped me convince him to take it. NOTE 1 I attribute the term 'William Withering's Wonderful Weed' to Dr Paul Minton, cardiologist, teacher, and friend, who used it during my internal medicine residency, 1969-72. He does not recall its source and I have not found it cited in the medical literature. BIBLIOGRAPHY Acierno, Louis J. 1994. The History of Cardiology. New York: The Parthenon Publishing Group. Bean, William Bennett (ed.). 1950. Sir William Osier Aphorisms: From His Bedside Teachings and Writings. New York: Henry Schuman. Eichhorn, Eric J., and Mihai Gheorghiade. 2002. Digitalis. Progress in Cardiovascular Diseases, 44: 251-66. Estes, J. Worth. 1979. Hall Jackson and the Purple Foxglove. Hanover: University Press of New England. - 1986. The Changing Humors of Portsmouth: The Medical Biography of an American Town, 1623-1983. Boston: The Francis A. Countway Library of Medicine. - 1990. Dictionary ofProtopharmacology. Canton, MA: Science History Publications. Fuchs, Leonart. 1542. De Historia Stirpium Commentarii Insignes. Basileae. Goldman, Peter. 2001. Herbal medicines today and the roots of modern pharmacology. Annals of Internal Medicine, 135: 594-600.

William Withering's Wonderful Weed 199 Hauptman, Paul J., and Ralph A. Kelley. 1999. Digitalis. Circulation, 99: 126570. Holmes, Oliver Wendell. 1911. Currents and counter-currents [I860]. In Medical Essays: 1842-1882. Boston: Houghton Mifflin. Hurd-Mead, Kate Campbell. 1938. 'Old Mother Hutton:' honor to Doctress Hutton who first studied digitalis and its effect on the heart. Medical Life, 45: 20-2. Jacobs, Maurice S. 1936. The history of digitalis therapy. Annals of Medical History, 8, n.s.: 492-9. Johansson, Sheila Ryan. 1999. Death and Doctors: Medicine and Elite Mortality in Britain from 1500 to 1800. Working paper. Cambridge: Cambridge Group fo the History of Population and Social Structure. Kaptchuk, Ted J. 1998. Intentional ignorance: a history of blind assessment and placebo controls in medicine. Bulletin of the History of Medicine, 72: 389^33. Kinne-Saffran, Eva, and Rolf K.H. Kinne. 2002. Herbal diuretics revisited: from 'wise women' to William Withering. American Journal ofNephrology, 22: 112-18. Krantz Jr, John C. 1973. Digitalis - Accolades for Mrs. Hutton. American Journal of Pharmacy, 145:198-200. Krinkler, Dennis M. 1985. Withering and the foxglove: the making of a myth. British Heart Journal, 54: 256-7. Le Clerc, Daniel, Andrew Baden, and James Drake. 1699. The History ofPhysick or an account of the rise and progress of the art, and the several discoveries therein from age to age ... Written originally in French ... and made English by Dr. Drake and Dr. Baden. London: D. Brown, A. Roper, T. Leigh, and D. Midwinter. Lee, M.R. 2001. William Withering (1741-1799): a Birmingham lunatic. Proceedings of the Royal College of Physicians of Edinburgh, 31: 77-83. Norman, Jeremy N. 1985. William Withering and the purple foxglove: a bicentennial tribute. Journal of Clinical Pharmacology, 25: 479-83. OED. 1971. The Compact Edition of the Oxford English Dictionary. Oxford: Oxford University Press. Osier, William. 1945. Aequanimitas, 3rd ed. Philadelphia: The Blakiston Company. Roddis, Louis H. 1936. William Withering and the introduction of digitalis into medical practice. Annals of Medical History, 8: 93-112,185-201. Rush, Benjamin. 1951. Letters, L.H. Butterfield (ed.). Princeton: Princeton University Press. Santayana, George. 1923. Scepticism and Animal Faith. New York: Scribner's. Wallis, Peter John, and R.V. Wallis. 1988. Eighteenth Century Medics: Subscrip-

200 Richard J. Kahn tions, Licenses, Apprenticeships, 2nd ed. Newcastle Upon Tyne: Project for Historical Biobibliography. Whitfield, A.G.W. 1985. William Withering and 'An Account of the Foxglove/ Quarterly Journal of Medicine, 223: 709-11. Willius, Fredrick A., and Thomas J. Dry. 1948. A History of the Heart and the Circulation Philadelphia: W.B. Saunders. Withering, William. 1776. A Botanical Arrangement of All the Vegetables Naturally Growing in Great Britain. Birmingham: M. Swinney. - 1785. An Account of the Foxglove, and Some of Its Medical Uses: With practical remarks on dropsy, and other diseases. Birmingham: printed by M. Swinney; London: G., G., Jr, and J. Robinson. Wray, Susan, D.A. Eisner, and D.G. Allen. 1985. Two hundred years of foxglove. In W.F. Bynum, C. Lawrence and V. Nutton (eds.), The Emergence of Modern Cardiology. London: Medical History, Supplement no. 5; Wellcome Institute for the History Of Medicine, 132-50.

Dr Heisenberg, Are You Certain about the Diagnosis? PAUL BERMAN

History entered my medical practice by a circuitous route. I grew up in the household of a physician: my father was a clinical professor of surgery. When teaching his residents, he frequently spoke of John Hunter's philosophy of being a nonoperating surgeon first. It was making the diagnosis that was most important, for without that, surgery would be difficult and possibly dangerous. I was trained as an internist and entered private practice in the late 1960s. My younger brother became a surgeon, and I use to joke with my father that I went into internal medicine because we needed at least one thinking man in the family. What sparked my interest in medical history was a camping trip to England in 1981 with my family. We stopped by Edward Jenner's hut, where, having learned about cowpox from milk maids, he had first inoculated a young boy. Later that year, my hospital celebrated its centennial and I volunteered to write a short history of the institution. An old vault yielded the original records of the first patients admitted, their diagnosis, and treatment. I became fascinated with the cases, the diseases, and the therapeutics, and wanted to learn more about medical practice in western Massachusetts. I enlisted the help of Martin Kaufman, a local medical historian and editor of the Historical Journal of Massachusetts. He assigned a reading list and gave me elementary instructions on how to do research. This adventure would lead to my first publication of original research in history (Berman, 1990). Dr Kaufman also introduced me to the American Association for the History of Medicine (AAHM), and I traveled to Duke University in Durham, North Carolina, to attend my first meeting. There I had the

202 Paul Herman

28 Berman's Box. The mysterious wooden chest containing a treasure trove of handwritten essays written between 1835 and 1845 by members of the Union Medical Association (UMA). Courtesy of Worcester Medical Society.

privilege of meeting Saul Jarcho. He and my father had interned together at Mount Sinai Hospital in New York City, and my father had always spoken highly of him. Jarcho was a gracious man. We spent a memorable hour talking about the importance of medical history in a physician's life. Our encounter left a deep impression: I could combine practice and medical history. In 1988,1 took time off from my clinical work to teach at the University of Massachusetts Medical School in Worcester, Massachusetts. One afternoon, the archival librarian, who knew of my interest in American medicine, asked if I wished to see the contents of a box left to the medical school some ten years previously. The box was the size of a small trunk and made of wood; the letters 'U.M.A/ were printed on one side (figure 28). It was filled with handwritten case records, each folded neatly in a plain paper wrapper and tied with a red silk cord. There were more than four hundred records that extended from 1835 to 1845. I learned that the Union Medical Association (UMA) was a medical improvement society with a membership of twenty-six practitioners who had been apprenticed or medi-

Dr Heisenberg, Are You Certain about the Diagnosis? 203 cal school trained. It met monthly for discussion of interesting cases and issues that were of importance to the profession. Since I had no formal education in the history of medicine, I invited Worth Estes, whom I had met at the Duke AAHM meeting and who was an expert in eighteenth- and nineteenth-century American medicine, to help me in my approach to this collection. He outlined various subjects that were pertinent to this time period: the UMA's response to quackery and alternative practitioners; medical controversies; and the practice of obstetrics - to mention but a few. I also enrolled in courses offered by the AAHM in how to write history, where I found dynamic and thought-provoking teachers. Opening the wrappers and unfolding the papers of the UMA collection was exciting. Here was a chance to see into the past, to read passages that are as significant today as they were over a hundred years ago. I was impressed by the insights of these men regarding the complexities and perplexities of the profession - insights that we seem to lack today. Our practices seem overshadowed by the magic of technology. Because we have a lot to learn from the past, we need to listen to what our predecessors said. To my great amazement, my analysis of the UMA papers led to a series of presentations at the meetings of the AAHM and the lead article in a prestigious medical history journal (Berman, 1995). Without really trying, I had become a bonafide medical historian, and the impact of this transformation is felt in my practice. Two case histories illustrate the way in which a pair of nineteenth-century doctors, Moses Southwick and Abel Wilder, participated in my care of patients. Southwick was a graduate of Brown University and Bowdon Medical School; he practiced in Blackstone, a small village in southern Worcester County, Massachusetts. Wilder was an apprenticed-trained physician who also practiced in Blackstone. In October 1838, Southwick read a paper at one of the UMA meetings entitled 'Obstacles to Medical Improvement.' In it, he stated that 'the problems of medicine cannot often, like those of mathematics, be demonstrated with absolute certainty ... but we can arrive at a degree of certainty equally satisfactory and equally valuable with those of any other science' (figure 29). A few months later in May 1839, Wilder presented the 'Advantages of the Association,' stating that 'medicine from its difficulty, perplexity, and uncertainty demands close, vigilant research ... to obviate the uncertainty of the healing art is what should interest and actively engage all the members of the profession' (figure 30).

29 Excerpts of manuscript essay describing medical uncertainty, by Moses Southwick, 1838. Courtesy of Worcester Medical Society.

30 Excerpts of manuscript essay describing medical uncertainty, by Abel Wilder, 1839. Worcester Medical Society.

206 Paul Berman

The words of these fellow clinicians separated from me by 150 years have stayed with me since the moment I first read them. They encapsulated an idea that I had long thought of as a product of my own era. In an age of CT scans, PET scans, MRIs, and other technical marvels, we sometimes forget that medicine is not mathematics and uncertainty is a reality. Whenever I see a patient in the office I always wonder if I can be sure of the diagnosis. Medicine deals with the human body, a dynamic system, and how that body interacts with its environment. Still we understand so little of body systems and their interactions. As my father used to say, we are learning 'more and more about less and less/ Textbooks of medicine describe ideal disease states, but those of us who have been in practice for many years realize that these texts are meant only as an introduction. Continued education and experience provide the rest. As the late Alvan Feinstein reminds us, 'clinical medicine is the most scientific art and the most humanistic science. Without the art, there can be no data for the science. Without the science, there can be no reason for the art' (1985, 349). I would add that without accepting the continuous presence of uncertainty, good medical care might be in jeopardy. Long before I read Wilder and Southwick, I had formulated this same opinion, which I like to call the Heisenberg principle of medicine. A German physicist and Nobel laureate, Werner Heisenberg formulated his 'uncertainty principle' in 1927. This principle stated that 'one can never know simultaneously with perfect accuracy both of those two important factors which determine the movement of one of these smallest particles (atoms), its position and its velocity. It is impossible to determine accurately both the position and the direction and speed of a particle at the same instant' (Heisenberg, 1953, 30). The first case that will illustrate the significance of medical uncertainty occurred during my pre-history days in the late 1970s. Abby was a twenty-year-old senior at a local college who presented to my office with abdominal pain, vomiting, and diarrhea. But she seemed sicker than the usual case. She also complained of shaking chills and appeared more dehydrated than her symptoms would suggest. She lived in a dormitory. Afraid to send her back to a residence, where she would be alone, and unable to send her home because her parents were on vacation, I admitted her to the hospital. Physical examination revealed an alert, dehydrated woman with a fever and a diffusely tender abdomen. Her blood count, renal function,

Dr Heisenberg, Are You Certain about the Diagnosis? 207

and electrolytes were normal. I gave her intravenous fluids. To investigate her fever, I ordered cultures of her blood, urine, and stool, looking for an infection. Twenty-four hours later she was no better; she had developed a sudden drop in the count of all her blood cells. Uncertainty. Was this leukemia? I called my hematology consultant. He examined a smear of her blood under the microscope and found no evidence of leukemia; however, he did notice helmet cells. These oddly shaped and partially fragmented red cells are seen in a dangerous condition frequently associated with serious infection, called disseminated intravascular coagulation (or DIG). More uncertainty. Was this illness a viral infection as we had assumed, or was it a more serious bacterial sepsis? The one body system that we had not evaluated was the brain. Although she had no neurological problems, we did a spinal tap. The tap was normal. More uncertainty. Fear also began to creep into the picture. Were we missing an overwhelming sepsis that was depressing the bone marrow and creating the blood picture? Unsure, the hematologist and I decided to treat her with massive doses of penicillin. At fortyeight hours her blood cultures grew meningoccocus, the organism that causes meningitis, a fatal disease. But because of our uncertainty, she was already on the right treatment and getting better. When I first read Wilder and Southwick, I was taken back to my frightening experience with this young student. Persistence born of uncertainty had saved her life. The second case was Jack, a seventy-seven-year-old gentleman who came to my office in February 2002 with a cough, sore throat, and runny nose; but he had no fever and his examination was normal. Diagnosing a viral upper respiratory infection, I treated him with over-the-counter medications - analgesics and cough medicine. The following morning, I received a call from the emergency room, where Jack had been taken in the night by ambulance with severe shortness of breath. A chest X-ray revealed 'white out' of his right lung, diagnostic of extensive pneumonia. Now, he also had a high fever, elevated white blood cell count, and low oxygen levels. In the hospital on oxygen and antibiotics, he continued to do poorly and became confused and combative. The oxygen saturation of his blood was falling, and he was transferred to the intensive care unit, intubated, and placed on a respirator. Even with pure oxygen, his breathing problems were difficult to manage; however, with the introduction of positive pressure to force oxygen into the lungs (PEEP), his condition was finally stabilized.

208 Paul Herman

During the next few weeks, Jack received multiple antibiotics for the pneumonia that now occupied both lungs. He could not eat and was fed by a tube. Pulmonary and infectious disease experts were consulted. Days went by, but he remained on the respirator, sedated with drugs. The chest X-ray findings worsened: both lungs showed a 'white out.' We tried unsuccessfully to wean him off the respirator. After two weeks, the nursing staff and many of my medical colleagues questioned the pulmonologist and me about our continuing this level of care. Our critics pointed out that at seventy-seven, Jack was advanced in years, and he had a remote history of heart disease. Would he recover all his faculties, if he survived at all? Uncertainty again. Who knew? What was the right thing to do? Jack had what is known as adult respiratory distress syndrome (ARDS). The word 'distress' is an understatement; a better name would be ARDDS or 'dire distress syndrome.' A review of the recent literature revealed that the average length of time on a respirator for people over age seventy was nineteen days, and their survival rate was only about 50 percent (Ely et al., 2002). While conducting my search, I kept hearing the words of Wilder and Southwick, who allowed uncertainty to govern their actions. Day 20 passed with no change except that our critics were multiplying. But still nobody knew for sure. And because no one could be certain, those who had been second-guessing the treatment continued to comply with our orders. Then on Day 23, Jack's chest X-ray showed improvement, the PEEP was stopped, and his oxygen level held. By Day 25 he was off the respirator, requiring only nasal oxygen, frail but alert. From that day on, his condition gradually improved, and he was discharged to a local nursing home to regain his strength. Because he was still unable to eat, a feeding tube, known as a PEG, was placed directly into his stomach. Three months later, he was sent home, still weak, with the feeding tube in place and requiring portable oxygen to ambulate. I planned a house call two weeks after discharge from the nursing home so that Jack would not have to drag himself to the office. I was met at the door of his small ranch house by his wife, Jean, who directed me toward the bedroom. I expected to see an ashen figure resting on his bed. Before I could reach the room, out strode an alert, well-fed, ruddyfaced gentleman with no portable oxygen and no feeding tube. He looked exactly like the healthy, vigorous man I had seen in my office for many routine visits over the years. Persistence of treatment and superb nursing in the face of uncertainty had surely saved his life too.

Dr Heisenberg, Are You Certain about the Diagnosis? 209 A year almost to the day that Jack had first appeared in my office with his 'routine' upper respiratory infection, he stopped by for a checkup. He and his wife were on their way to Florida. He was driving his big camper and looking forward to the sandy beaches and warm

sun.

What if I had followed the advice of the second-guessers and stopped at Day 15? What if I had not let uncertainty rule my actions? Not all my doubtful diagnoses have such happy outcomes, but now, whenever I am in doubt - and that is often - I remember the words of Wilder and Southwick. They understood, as I do, that uncertainty is a valuable tool of the medical art. BIBLIOGRAPHY Berman, Paul. 1990. Medical practice in the Connecticut River Valley, 16501750. Historical Journal of Massachusetts, 18 (Winter): 27-36. - 1995. The practice of obstetrics in rural America, 1800-1860. Journal of the History of Medicine and Allied Sciences, 50: 175-94. Ely, W., A. Wheeler, T. Thompson, M. Ancukiewicz, K. Steinberg, and G. Bernard, for the Acute Respiratory Distress Syndrome Network. 2002. Recovery rate and prognosis in older persons who develop acute lung injury and the acute respiratory distress syndrome. Annals of Internal Medicine, 136: 25-36. Feinstein, Alvan. 1985. Clinical Judgment. Malabar, FL: Robert Krieger Publishing. Heisenberg, Werner. 1953. Nuclear Physics. New York: Philosophical Library. Southwick, Moses. 1838. Obstacles to Medical Improvement, October. DMA Manuscript Collection. Union Medical Association (UMA). Manuscript Collection housed at the Worcester County Medical Society office in Worcester, Massachusetts. Wilder, Abel. 1839. Advantages of the Association, 27 May. UMA Manuscript Collection.

This page intentionally left blank

Explaining Differences

This page intentionally left blank

Trust and the Tuskegee Expeariments JOEL D. HOWELL

Prologue I grew up in the American South. The Deep South. Mississippi, a land of hot, humid summers, exuberant Kudzu vines, beautiful, red soil, and a place where the world has long been defined in terms of race. In the South, along with knowing that one is white, as I am, comes the constant awareness that many others are not. Race usually trumped the other great divider of persons - religion. My mother is Jewish, but there are simply not enough Jews in Columbus, Mississippi, for that to be a major issue. Catholicism was another story - about 10 percent of the population was Catholic, and I recall very serious elementary school conversations about whether Kennedy's election would inevitably place the pope in charge of U.S. policy. No one seriously considered the possibility that an African-American person might become president. But with close to a fifty-fifty split between white and black, and with the sort of racism that was so overt in the late 1960s and early 1970s, race was the dominant theme of my childhood. Brown v Board of Education came slowly to the Deep South. During much of the 1960s, state law continued to make it illegal to attend school with members of another race. My mother would fill in the blank on school forms marked 'race' with the word 'human.' Certainly separate, the two systems were hardly equal. When the white schools had worn out their textbooks, they were 'given' to the black schools. And so forth. When I was in eighth grade, 'freedom of choice' arrived. This failed attempt to limit desegregation of the public schools by allowing 'choice' (predictably) meant that a few brave African-American students chose

214 Joel D. Howell

to go to the white schools, and no white students chose to go to the black schools. One morning, I heard my Sunday-school teacher declare that 'freedom of choice' would destroy the public school system. Naive eighth-grader that I was, I went home that evening and carefully perused the Bible, trying to find the passage(s) that explained why going to school with a member of another race would destroy the public schools. Somehow I couldn't manage to find that section - the Bible's message seemed to be just the opposite. That was the last time I attended Sunday school. As a high school senior in 1971, I lived through real, court-ordered desegregation. The process was made easier by the emergence of a 'freedom academy,' an all-white private school that allowed those students who simply could not countenance going to a desegregated school to pay high tuition for the privilege of attending a lily-white school. And I left the South in 1971, filled with the spirit (as I saw it) of Dr Martin Luther King, Jr, ready and willing and truly believing that all of humankind, black and white, brown and yellow, would soon walk down the street together, holding hands and singing 'We shall overcome.' I went to college in the North, ready to befriend one and all. But it quickly became all too apparent that most of my African-American fellow students didn't treasure such cross-racial friendships as much as I. They weren't eager to eat lunch with me, hang out with me, or have much to do with me beyond a very superficial sort of relationship. 'Why?' I wondered. 'What have I done? I'm on your side! Can't you see?' I was hurt and disappointed. Although I did not come close to fully understanding what was going on, I soon realized that a barrier existed between us, the roots of which lay far deeper than anything I had myself done, or said, or overtly been a part of. I decided to become a physician after a summer job as an orderly in the local hospital back home. There, race shaped even the physical landscape. Every room in the hospital was a private room. But not because the hospital was an elite, wealthy enterprise - far from it! Having only private rooms eliminated the possibility that white and African-American people might have to share the same space. Many patients were black; no physicians were. Act 1: Medical School Race was never far from the surface in medical school. The University of Chicago is a predominately white institution situated on the south

Trust and the Tuskegee Experiments 215

side of the city. One night, as an internal medicine resident I found myself admitting a young African-American man with acute leukemia. He knew only that he had suddenly gone from being a strong, healthy man to being one who was weak, feverish, and very afraid. Sketching on the back of a box of tissues, I tried to explain to him what was going on inside his body and what we wanted to do about it. His blood was filled with 'bad' cells. We wanted to give him powerful medicine that would wipe out most of his blood cells, both 'good' and 'bad.' We hoped that the good cells would eventually grow back, but in the meantime he would have too few of any blood cells, a situation that would put him at grave risk of a number of calamities. This was a treatment that would make him very sick indeed, and that might well kill him instead of curing him. It must have been a frightening discussion for him. He eventually agreed with our proposed course of treatment. What choice did he really have? But he did so while looking at me with me with an expression that said clearly: 'I do not trust you. You may be experimenting on me, you may be torturing me, you may simply not care about me. I do not know. There is nothing I can do about it - but I simply do not believe that what you are telling me is the truth.' We gave him chemotherapy. We wiped out all of his blood cells. A couple of weeks later, he died, succumbing to a massive fungal infection. As I moved through my training, I saw that sort of distrust - or even fear - evident on the faces of other patients, on the faces of parents who would hand over their ill children for care. Distrust was implicitly evidenced in the people who would delay coming to the hospital until the last possible instant, sometimes out of economic concerns, but sometimes out of fear of what would happen to them when they entered this academic, white institution. I must confess that I initially did not comprehend the reasons for this fear. I'm not sure that I can ever fully comprehend it. But as I (and much of America) started to learn more about the past abuses committed by people in health care against people of color, I found that history helped me both understand and mitigate the fear that can taint, even destroy, what ought to be the essence of every caring relationship between patient and physician. Act 2: Trust As I go about seeing patients, I try constantly to be aware of how they are feeling. Are they happy? Sad? In physical pain? Mental pain? Do they trust me? Trust is central whenever and wherever patients meet

216 Joel D. Howell

physicians. At one level, trust is important simply because of its inherent emotional effects. Trust can make the interaction over sensitive topics more comfortable for all concerned, especially when they are relative strangers. But trust is not just about well-being; it has instrumental value as well. Simply put, trust is essential to effective clinical practice. As part of figuring out how to advise them, I often ask patients prying, intrusive questions. Without trust, patients will hesitate to give frank answers to deeply personal questions, and they may refuse the probing physical investigations that are often necessary for optimum care. Many patients come to physicians when they are sick, weak, helpless, afraid that they will die. Those who enter the hospital find themselves strangers in a strange land, lacking control over much that happens to them, needing to trust that the decision-makers have their best interests at heart. Trust is no less important for patients who are seen in the outpatient setting. They often suffer with chronic diseases; all that a physician can do for them is to offer advice - advice that the patient hopes will lead to a longer, happier life. After leaving the doctor, the patient will then decide whether or not to act on that advice, whether to take the medication, change the lifestyle, get the test, come back to the clinic. Since the implementation of the plan is left to the patient, trust may be instrumentally even more important when the patient is out of hospital than when she is in. A similar calculus holds when healthy people come to physicians seeking to preserve that health. Absent trust, the physician's advice is less likely to be followed and the entire interaction between a patient and a doctor may be of little or no benefit to anyone. Trust may be enhanced or diminished in many different ways. A physician's interpersonal skills can foster trust: being attentive to the patient's needs or addressing her in terms of respect. Some structural barriers to trust are inherent to the patient-physician relationship. One example of such a structural barrier is the knowledge differential. The physician possesses far more medical knowledge than the patient; the patient must trust the physician not to abuse that power differential. Another barrier to trust stems from its lack of status as medical entity: trust between patient and physician is rarely addressed in medical training. Barriers to trust are especially apparent in the academic setting, for at least two reasons. First, the academic health center is the place where inexperienced people are learning how to be physicians; patients are

Trust and the Tuskegee Experiments 217

seen and cared for by medical students and trainees who are not yet fully trained. Accordingly, patients are obliged to trust that those trainees are supervised adequately. Second, the academic health center depends on trust for the creation of new clinical knowledge that requires experiments be done on human beings. Before patients consent to becoming subjects for research they must trust the people and institutions conducting the experiments. If not, they may decline to participate. Whether or not they are personally participating in research, patients may distrust academic doctors because of the organization's past participation in unethical projects. This sense of distrust will pervade their opinion of the entire institution and may color their response to advice on any topic. People may hesitate, or refuse, to donate organs in the event of their death, for fear that such an offer would lead to premature termination of care when they are critically ill. Lack of trust may even lead patients to avoid hospitals and health care providers altogether. Thus, barriers to trust not only can destroy the essence of the therapeutic interaction, they can also impede attempts to improve health care through research. Sometimes the reasons for distrust lie outside of the lived experience of the person being distrusted; they are opaque unless one considers the past. Some are rooted in the pervasive history of racism in the United States; some derive from a specific set of events. I had a very hard time accepting and understanding some of the distrust directed at me until I learned about historical events such as those that took place in and around Tuskegee, Alabama, from 1932 to 1972. Act 3: The Tuskegee Experiments The Tuskegee experiments' are a powerful example of why and how medical history ought to be an essential part of every clinician's education. These experiments are widely known by some of our patients (although what is 'known' is often wrong), but the story is important for everyone who lives in North America. Moreover, the significance of Tuskegee goes far beyond these specific events to offer lessons about a wide range of clinical interactions with a wide range of people. Race and racism have long been a part of American history. During the eighteenth and nineteenth centuries Africans were brought to the United States in chains, as items of property to be bought and sold. Even after the South lost the Civil War and after passage of the thirteenth amendment to the United States Constitution made slavery illegal, all was not well and good for African-American people. Through-

218 Joel D. Howell

out the country, and especially in the South, African-Americans continued to experience routine, state-sponsored discrimination in all walks of life, including education, military service, employment, and health care. In this context, starting in 1932, physicians conducted experiments using African-American men in and around Tuskegee, Alabama. While the word 'race' is often used in the early twenty-first century as though it had obvious meaning, the Tuskegee experiments were initiated in a scientific world in which 'race' had a very different meaning. Early in the twentieth century, 'race' was thought to be an essential characteristic that divided humankind into easily appreciated, distinct groups, each having its own set of innate biological properties, its own disease susceptibilities and responses. One of the most important diseases of the day was syphilis. Earlier studies had examined the disease almost exclusively in Caucasians. Some doctors felt that it would be useful to know more about the disease course in African-Americans. Then, as now, the federal government took on some responsibility for the health of its citizens. It was the United States Public Health Service that initiated its study of syphilis in the male 'Negro' in 1932. Having found a high incidence of the disease in and around Tuskegee, in Macon County, Alabama, physicians working for the Public Health Service concluded that the region's poverty and the men's behavior meant that they would not receive proper treatment. Macon County could thus form the site of a 'study in nature,' designed to reveal the natural history of untreated syphilis in the male Negro. The idea was, at some level, quite simple and obvious - follow clinically and pathologically a group of men who suffered from untreated syphilis and compare those men with another group of men from the same area who did not suffer from syphilis. In other words, the intent was to note signs and symptoms of the disease over time and how the disease affected the men's lives and longevity. These clinical findings during life could then be correlated with the pathological findings after death, when autopsies would reveal which bodily parts were affected and how. Some 600 men were enrolled in the study: 399 had syphilis and another 201 served as controls. The study eventually lasted for forty years, the longest nontherapeutic clinical experiment ever done. But the study is famous today for reasons not particularly noble. The experiments were deceptive from the beginning. The study was carried out in ways that were so disrespectful and dishonest that they would predictably destroy trust once those deceptions became known. The

Trust and the Tuskegee Experiments 219

men were lied to about their health and about the study's purpose even as they were brought in for regular physical examinations and laboratory studies. They were subjected to lumbar punctures to ascertain whether the disease had affected their central nervous system - so called 'back shots' - but they were not told why; in some cases, they were told, untruthfully, that the lumbar puncture was a form of therapy. When some men, suspecting that they were being deceived, sought therapy on their own, the investigators tried to prevent them from doing so. In one of the many incredible ironies surrounding the experiments, the investigators who actively prevented the men from receiving treatment were themselves members of the United States Public Health Service, the very branch of government charged with improving the health of all Americans. As the years went by, the investigators were aided by local community members. Nurse Eunice Rivers was a highly praised African-American graduate of the Tuskegee school of nursing and a key member of the research team. Without such local people who enjoyed the trust of the experimental subjects, northern investigators would not have been able to convince so many men to return for regular examinations. Nurse Rivers's active participation in the research is another one of its great ironies. Although most of us who grew up in the 1960s didn't hear about the study, it was hardly a secret. Beyond a core group of investigators who pursued the study over decades, hundreds of physicians-in-training and medical students were involved for shorter periods of time. Data were regularly reported in widely distributed medical journals under such hard-to-misinterpret titles as 'Untreated Syphilis in the Male Negro' and 'The Tuskegee Study of Untreated Syphilis.' These reports invariably came to the same basic, unsurprising conclusion: failure to treat what was becoming an increasingly treatable disease shortened the men's lives. When I first started to think about these experiments I could not help but wonder how they had gone on for so long. The experiments continued through events that might (and in hindsight should) have provided more than adequate reasons to stop the study. By the mid-1940s the accepted treatment for syphilis changed from salvarsan and malaria to penicillin and other effective antibiotics. But the men were not treated. The study continued through the Second World War and the war crimes trials that followed, through the writing of an international code of ethical conduct that clearly prohibited nontherapeutic, deceptive ex-

220 Joel D. Howell

periments such as the ones being done at Tuskegee. It plowed on through the civil rights movement, a national examination of race in America that convulsed the country as it affected every corner of the land. In 1955, in Montgomery, Alabama, not far from Macon County, an African-American woman named Rosa Parks refused to move to the rear of a city bus. Her defiance of segregation created a boycott that sparked a series of initiatives throughout the South and elsewhere. A 1963 march on Washington, DC, for civil rights was followed by passage of the Civil Rights Act of 1964, which outlawed segregation, and the Voting Rights Act of 1965; both these laws were intended to aid African-Americans, like the study subjects. Yet, the Tuskegee experiment went on. It continued - again, almost unbelievably - through a 1969 meeting at the Centers for Disease Control (CDC) that convened physicians and scientists to consider the specific question of whether or not the Tuskegee study should be stopped. It did not end until 1972, when a CDC employee 'blew the whistle' and Jean Heller of the Associated Press distributed information to journalists around the United States. Public outrage followed. A federal government report agreed that the men had been deceived, although some found this report's exploration of the racial bias of the experiments woefully inadequate. In 1997, the U.S. President William Clinton offered a formal apology to the men, a truly remarkable and almost unprecedented acknowledgment of the culpability of the United States government in perpetuating a shameful wrong against these African-American men. Interlude In the early 1970s, I sit in a packed auditorium to hear Linus Pauling, the only person ever to win two unshared Nobel prizes, talk about the biochemistry and genetics of a disease that affects mainly AfricanAmerican people: sickle cell anemia. As he talks about the genetics of the disease and suggests that people who are carriers inform each other of that fact and refrain from having children, dozens of people stand up and leave the auditorium in protest. I do not understand. Shortly afterwards, I learn about Tuskegee. I learn what wrongs have been promulgated against African-American people in the name of genetic science, of racism, and I start to understand why those people walked out.

Trust and the Tuskegee Experiments 221

Act 4: Lessons of the Tuskegee Experiments for Twenty-First-Century Clinicians When I see patients, I give them advice. If people do not trust me, they may not take my advice. Knowing about the Tuskegee experiments helps me to understand why some of my patients approach me with a considerable amount of distrust; why they question my veracity when we have never met. Rather than seeing that distrust as unwarranted or irrational, a clinician who knows about Tuskegee may realize that it is an all-too-rational response to past history; she can react, not with defensiveness, but with comprehension. The clinician can acknowledge the distrust and, if appropriate, reveal her appreciation of the reasons for it. That discussion may help restore the patient's confidence if only by showing that the doctor is aware of past wrongs and will try not to perpetrate similar misdeeds (see Humphreys this volume). The Tuskegee story is disturbing enough all by itself, but a variety of myths serve to further undermine trust. One is the belief that the men were intentionally injected with syphilis. This myth leads to another, which becomes understandable in light of the past: the fear that AIDS was created to infect African-American people. Such ideas might seem farfetched, even paranoid, to the clinician who is unaware of historical events. But such myths become much more understandable when they are set in the context of the forty-year history of how the U.S. government prevented African-American men from being treated for a treatable disease. Some people today are reluctant to receive any injection for fear that the physician intends not to cure but to cause disease; these people may thus fail to accept potentially life-saving therapy. Thinking about the Tuskegee experiments raises a whole set of difficult questions about the role of race, not only among the patients, but also among their caregivers and the larger audience. How should we think about Nurse Rivers? An African-American resident of Macon County, she was essential to the conduct of these experiments. Yet what could she have done about them, and when? Reports of Tuskegee were widely distributed - not only to Harvard and Yale, but also to the traditionally African-American medical colleges at Meharry and Howard. And the distrust engendered by Tuskegee is not confined to white physicians. Anyone in health care or government may be seen as suspect, of whatever ethnicity or racial background. Thinking about the history of Tuskegee should also sensitize clini-

222 Joel D. Howell cians to the possibility that analogous experiments may yet continue. Are we reading today about similar 'studies in nature/ such as the trials of AIDS vaccines in Africa? How should clinicians react when asked to participate in recruiting patients for a clinical trial, particularly members of a minority group? Knowledge of Tuskegee should help them look at such requests with a critical eye. Even when the experiments seem appropriate and ethically justified, clinicians should be aware that the legacy of the past will lead many potential study subjects to refuse to participate. Why did the Tuskegee experiments go on for so long? The answer has a great deal to do with race and racism. One of the early experimenters made a chilling and revealing comment: 'We have no further interest in these men until they die.' The study subjects were not human beings, they were not patients, they were simply walking autopsy preparations. Alas, racism remains with us now. It is part of the world in which we and our patients live and work. Many physicians alive today have no memory of an era in which segregation was legal in many parts of the United States. But those memories remain alive among the families of those who most directly bore the brunt of oppression. Indeed, one might ask if the situation would be different had Tuskegee never happened. Sadly, there would still exist a lamentable legacy of racism in the conduct of medical care and the promulgation of medical research. Tuskegee helps to explain that legacy; it does not embody it. People of color have long been mistreated by the medical profession. Fears of exploitation predate the experiments; fears of racism, disrespect, and even of genocide would persist even if Tuskegee had never happened. Clinicians who care for people of color need to be aware of these fears and how they may shape physician-patient interaction. Talking and thinking about Tuskegee may be most important now as a start to talking and thinking about the general issue of race and health care. This history needs to be known by all future doctors. Act 5: Teaching Tuskegee Teaching medical students, residents, and fellows requires many techniques and approaches. The didactic lecture followed by discussion is not without its benefits and pitfalls. I often use a thirty- to forty-minute description of the Tuskegee experiments followed by equal length of discussion. The discussion may help the group bond over important issues or ideas, especially when interactions are enhanced by personal

Trust and the Tuskegee Experiments 223 vignettes from the audience that serve to make the experiments' relevance more tangible. One disadvantage of this approach is that some people are uncomfortable speaking up on a topic that is so emotionally charged. Discussions of race can quickly get personal, and it takes a self-confident student to talk, as some have, about what it feels like to be an African-American medical student encountering palpable distrust from an African-American patient. The entire class has appreciated the rewards of such courage. Another device for teaching Tuskegee is David Feldshuh's powerfully evocative play Miss Evers' Boys (1995), also the basis for a featurelength made-for-TV movie (available at many rental agencies). A reasonably appropriate, fictional rendering of the events, this play has received such widespread attention that it may have had as much of an impact on the general population as any single scholarly work about the experiments. Small-group readings of the play can be moving; giving voice to a role, or listening to it being read by a classmate, brings home the emotional impact of the events. When staging a reading for my classes, I do not strive to match the student's sex or race with those of the characters; the results can be usefully startling. Another excellent gateway is Susan Reverby's volume, Tuskegee's Truths (2000); it contains a series of letters written by various protagonists. I have the students reply to one of these letters from the perspective of one of the historical characters. This approach not only helps students to engage with and contextualize a specific moment in the long history of the experiments, it also invites a more general discussion of the process of historical research. By considering whose voices are preserved in these letters and whose voices are absent, students begin to realize that history, like natural science, is something that is created by people working in a specific time and place and with specific sources (and lack of sources). But, for me, the relevance of this history in clinical care is most readily apparent when I am seeing patients. I find that it can be useful to refer to Tuskegee when a patient, African-American or not, behaves in a manner that suggests that he or she does not trust my advice. A reminder of trust and Tuskegee may also be useful with trainees or colleagues who use the standard rhetoric of so-called 'patient noncompliance' to blame patients. A discussion of the Tuskegee experiments can help clinicians to think about why a person may not follow advice, no matter how well reasoned and intentioned it may be. This consideration may lead physicians to change their own behavior in ways that may be more apt to produce the desired results.

224 Joel D. Howell

African-Americans make up a large proportion of the population in some parts of the country. But every community will have some identifiable groups of patients whose cultural history and beliefs differ from those of their caregivers. Tuskegee can be a springboard for a broad discussion of the need to understand the importance of the history and culture of all patients, their interactions with the health care system, and the reasons for how and why they arrive to see the doctor with specific ideas and expectations. Epilogue As I write this essay, a fifty-five-year-old African-American man with diabetes comes to see me and one of the house officers whom I supervise. Physicians in another medical system are treating the patient with insulin, and he has had a couple of episodes of low blood sugar in the workplace. He has recognized these episodes and treated them appropriately. But his employer is concerned and has encouraged, practically insisted, that he seek another opinion. She doesn't trust his other doctors and fears that they may be experimenting on him without his knowledge; she sees the rare (albeit dramatic) hypoglycemic episodes as evidence of a nefarious plot. The house officer and I carefully review the patient's history and treatment plan. It is completely appropriate, almost exactly what we would advise were we seeing him as a new patient to our system. We reassure him that he is receiving excellent care, that the infrequent episodes of low blood sugar are not unexpected and easily managed, as he is already doing. We also write a letter, at the patient's request, providing our opinion to his employer. Knowing about the Tuskegee experiments, we receive the employer's worries not as a sign of paranoid ideation, but as a reasonable concern, worthy of our serious attention. Knowing about Tuskegee helps as well to understand those who did not trust the government enough to be treated for possible anthrax exposure; and those who refused to fill out an organ donation card; and those who didn't take their medication for hypertension, or didn't see a physician at all, only to become some of the tens of thousands of African-Americans to suffer a disabling stroke or die unnecessarily young. The story of the Tuskegee study must not be forgotten so that the lessons it offers will persist long after all those who were forced to live it have gone.

Trust and the Tuskegee Experiments 225 Acknowledgment I thank Susan Goold for her comments on this essay. BIBLIOGRAPHY Feldshuh, David. 1995.Miss Evers' Boys. New York: Dramatists Play Service. Gamble, Vanessa N. 1997. Under the shadow of Tuskegee: African Americans and health care. American Journal of Public Health, 87: 1773-8. Jones, James. 1981; 1992.Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press. Reverby, Susan (ed.). 2000. Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill: University of North Carolina Press.

Beware the Poor Historian MARGARET HUMPHREYS

Physicians are all familiar with patients who tell incoherent stories about prior illnesses, or know nothing of surgeries made obvious by the scars on their bodies. When their stories do not make sense, we dub such patients 'poor historians/ inadequate witnesses to their own health histories. Whether due to failing memory, ineffective communication with past medical care providers, or the intrusion of alternative modes of understanding illness, these narratives do not provide the information sought by the practitioner for clarifying present health status. But yet another kind of 'poor historian' can be found in the clinic: those very practitioners who are highly versed in modern medicine but inadequately prepared to understand the changing worlds of their patients, especially the most elderly. When exploring why a patient's brother died of an abdominal infection - let us say, for example, appendicitis - it is helpful to know that effective antibiotics for enteric organisms were still unavailable back in 1935. I asked the students in my history of public health class, 'What two blood tests were common in the mid-1970s for brides-to-be?' One premedical student replied, 'An AIDS test?' By the end of term, she will know that AIDS was not recognized until 1981, but how many of her peers will be equally well informed? (The tests, by the way, were for syphilis and rubella immunity.) As our population ages, it will be increasingly common for physician and patient to be separated by half a century; history education can help to narrow the great gap in understanding that such disparity inevitably entails - a gap that has an impact on health care. My historical training preceded medical school and residency. The nametag that I wore as a resident included the PhD letters, leading to not infrequent questions about my field of research. Expecting 'bio-

Beware the Poor Historian 227

chemistry' or 'cellular biology/ the questioner was often caught off guard by the peculiar answer, 'history.' Some asked whether this odd background - not just in history but in medical history - had made any difference in my medical training. I developed a few stock answers. One was that simply being seven years older than other students at the start of medical school provided some edge in maturity. Another answer was the fundamental insight that physicians of every generation have had strong faith in their teachers and their knowledge base; knowing that mistakes have been made, it would behoove us to be humble in our assertions of privileged authority. As all of us who provide primary care to menopausal women can attest, the true path can change overnight, as it did in July 2002 with the Journal of the American Medical Association (JAMA) report on hormone replacement therapy. It is useful to remember that we are not the first physicians to deal with admitting mistakes to patients while hoping to retain their confidence and respect. A doctor who expects change and offers treatment with such caveats in mind may be more effective in the long run than one who is rigidly dogmatic about current guidelines. One other answer to the 'cui bono?' question concerned its sheer factual usefulness. In my study of history, I had learned the medical language, typical practice, and idiosyncratic, cultural interpretations of prior decades; at times, I could understand patients who were opaque to other interviewers. Some examples will clarify the point. While a medical intern at a teaching hospital in Boston during the late 1980s, I was part of a team who admitted an elderly patient with chest pain. A Jewish gentleman of eighty-four who had worked in the insurance industry, Mr Lipsig had been remarkably healthy all his life. The diagnosis of heart attack was evident from his symptoms, electrocardiogram, and blood work. As part of the admission evaluation, we ordered a chest X-ray. It was strange: the lower half of the right lung field was a 'white out/ instead of the clear black with scattered markings consistent with the normal, aerated lung. The appearance suggested that his lung was full of dense pus, as in dangerous pneumonia, although he had no other symptoms, such as cough or fever, to support this diagnosis. The other parts of the lungs were abnormal as well, with evidence of scarring from prior disease. Our team 'ran the films by' the radiologist in the emergency room. What could have done this damage to the man's lungs? The radiologist knew of only one condition: tuberculosis. We were seeing the remnants of severe pulmonary tuberculosis. 'How long ago?' we asked. 'Could be decades/ she said.

228 Margaret Humphreys

Mr Lipsig's admission history said nothing of prior problems with tuberculosis. He had not been to this hospital before. In fact, a conversation with his son revealed that the old man had resisted medical care, refusing to go to doctors. He had consented tonight only because the pain was so penetrating that the family could override his objections. After medical therapy had made him comfortable, our team went to his bedside to gather more history. The son sat nearby, at times supplying information. After reviewing the X-ray and confirming the absence of symptoms, my resident asked, 'Did you ever have tuberculosis?' 'NO!' he trumpeted, becoming almost angry. 'I never had such a disease. Maybe I had pneumonia, when I was a teenager. Maybe that left these scars you see there. But TB? No!' Not wanting to agitate this cardiac patient any further, we left it at that. He did tell us that he came to the United States from Poland in 1922, passing through Ellis Island with his mother and two brothers (figure 31). At rounds the next day, we consulted another radiologist: 'If not TB, what else could have done this?' He thought it just possible that a severe bacterial pneumonia with accompanying empyema (pus in the space between lung and chest wall) might have left these scars, but he doubted it. If the old man had suffered pneumonia as a teenager, as he claimed, there would have been no antibiotics to prevent such a complication. On the other hand, such a severe infection would likely have been fatal. It was a puzzle. That evening his intravenous line failed, and the nurse called me to restart it. Now it was just him and me in the room - no son, no team of doctors. While preparing my implements for the difficult procedure of successfully puncturing fragile skin and tougher vein, I asked him about Ellis Island and the immigrant experience. 'I've heard they marked people's coats with chalk if some defect was found/ I offered. 'Yes, yes,' he said. 'My brother, they pulled him out of line. But in the end they let him come with us.' 'Wow,' I said inanely, preparing to stab his hand. Then he started to cry, and the needle had not yet touched his skin. It all came out. Yes, he had had tuberculosis - in Poland and on the boat. He knew that TB could keep him out of this country, but he made it through Ellis Island undetected. TB meant weakness; TB meant failure; TB meant death. He lied on entering the country and feared expulsion should he be found out. And had he been sent back, his fate as a Jew in Poland in the 1930s was horrible to contemplate. He never confessed his tuberculosis to anyone and kept it a secret from his wife and children. His

Beware the Poor Historian

229

31 At Ellis Island physicians of the U.S. Public Health Service examine Jewish immigrants suspected of tuberculosis. National Park Service, Statue of Liberty National Monument, New York.

'disease' extended well beyond physical and legal secrets. Even now, he was ashamed to admit that his body was so tainted. As a historian, I knew something of the time when TB carried such a damning stigma among certain populations. Perhaps my vague awareness of what he had been through and what the disease meant in that environment helped him become a 'better historian/ Not all encounters with the past at the patient's bedside were so loaded with grief. Some turned on understanding just one word, a word commonly used in, say, 1940 but forgotten today. As many diseases have a genetic component, it is a standard part of the medical

230 Margaret Humphreys

history to inquire about the cause of death of parents and grandparents; such information can shed light on the patient's own health risks. Years later, when I had become an attending physician, a puzzled medical resident reported that our patient's mother had died of 'La Grippe' at a very young age. 'How young?' I asked. Twenty-two/ she answered. At that time the patient 'was just two years old.' I glanced at the patient's birthday - 1916. 'So,' I prompted, tormenting the resident, 'what did momma die of, and why?' Blankness all round, from medical students to senior resident, led to a brief lecture about the deadly 1918 influenza pandemic (figure 32). In another case, I was attending an elderly black woman from Alabama, now living in Boston. Her thick accent hindered communication with the medical student, but as I had grown up in the south and was accustomed to the sound, I had no trouble understanding her. She had an as-yet-undiagnosed pulmonary condition, with fever, cough, and weight loss. In such circumstances, physicians look for exposure to risk factors that can help make the diagnosis. She had never smoked or worked in dusty factories, and she reported no family history of malignancy. The medical student asked if anyone in her family had ever had tuberculosis. 'Why, no, child. I never heard of nothing like that in my folks.' When we stepped out of the room and he summarized the case for me, he said the family history was negative for tuberculosis. Thinking that TB was highly likely given her symptoms, origin, and age, I suggested that we go back and push a little harder. I taught him the older names of tuberculosis. 'Ask about consumption, about phthisis,' I urged. Then I repeated 'phthisis' a few times until he got it. Back in the room we went. 'Has anyone in your family ever had consumption?' he asked. 'Why, sure! My mother, and her sister, and my cousin, they all had it. Mama was laid up at the county sanitary for a while but she finally come home. I never had it, though.' There was our answer. She had been heavily exposed to tuberculosis as a child. Our diagnosis was not yet nailed down, but it was enough to start medication and put her on airborne precautions while waiting for the culture to come back. As it turned out, the cultures were positive, and she improved rapidly on antibiotics. My research on malaria and medical care in the American south has made it easier to understand my rural North Carolina patients when they talk about the fevers of their youth and their treatments. Many rural southerners, black and white, rarely saw a doctor. Fevers were treated at home without trained medical attention, especially in the

32 In 1918 a wave of deadly influenza overwhelmed the medical facilities of the United States and the world. At Iowa State, the gymnasium was converted to a hospital. Special Collections Department, Iowa State University Library, Ames, Iowa.

232 Margaret Humphreys

depths of the Great Depression. A nonspecific fever might be ascribed to a virus ('I've caught the bug that's going around'), just as it is today. But before 1940, malaria was the nonspecific fever diagnosis of choice. So 'a touch of malaria' would be treated with a few swigs of Grove's chill tonic or 666. Quinine, the well-known specific remedy for malaria, is quite bitter; it is the flavoring in tonic water and was often the key ingredient in chill tonics. As a result, bitterness was associated with effectiveness against malaria; some patients tell me of the bitter teas that their mothers brewed to treat the fevers of their youth. In fact, some people still brew such concoctions for fever and come to the doctor only when these remedies have failed. In taking a medical history from rural southerners, especially the elderly, it is helpful to know that their access to health care was limited for much of their lives. An eighty-two-yearold black woman whom I treat for hypertension may have the medications for that high blood pressure now, but the years without it scarred her kidneys to a point of only minimal function. Conversely, history also reminds us that not only lack of care in the past but access to certain kinds of care could harm people's health. Awareness of the ways in which certain groups were injured by the medical establishment can help the contemporary doctor understand the behavior of patients within ethnic and racial groups. Immigrant groups at the turn of the twentieth century in the United States were frequently mistreated in the name of promoting public health. Sometimes the perception of abuse was actually due to poor communication between authorities who were acting in the best interest of the community and the immigrants who did not share the language and scientific perspective of those public health agents. In 1905 New Orleans, for example, the board of health sought to control the mosquito vector of yellow fever by pouring motor oil on cisterns and water barrels to kill mosquito larvae. Although this thin layer of oil made the water less palatable, it offered no real health risk. The Italian community misunderstood, and met the public health workers with armed resistance against this perceived 'poisoning.' But other times the public health authorities did discriminate unfairly: the quarantine of Chinatown during the San Francisco plague outbreak of 1900, or the targeting of Russian Jews during New York's typhus epidemic of 1894. With a collective memory of these injustices, it is not unrealistic for ethnic minorities to fear the physician in the big hospital, the monument to modern medicine that may be so alien to their experience. History helped me deal with the Gypsy invasion at the Boston hospi-

Beware the Poor Historian 233

tal where I trained, following the admission of a Gypsy man in the mid1980s. Gypsies were suspicious of doctors and nurses and wary of trainees who might be practicing on them. They also knew that the sick one wanted his family nearby, so as many as possible stayed in his room, and the rest overflowed into lounges and lobby. This defensive posture seems less irrational in light of the history of American medicine's interaction with ethnic minorities. As the siege continued for eight days, it became a major hospital issue. A recent article on Gypsy health beliefs became the reading of choice for teaching rounds, and I used the opportunity to emphasize the ways in which alternative belief systems could create frustration for the doctor and interfere with the delivery of the health care. Perhaps nowhere is this suspicion more evident than in the AfricanAmerican community. It did not take the 1972 revelations about the Tuskegee syphilis study to make the black patient wary of the physician, but the news about Tuskegee certainly amplified distrust. All medical students should be taught about the syphilis study, in which a cohort of black men with syphilis were followed, untreated, for forty years. The men were systematically lied to by the United States Public Health Service, which actively prevented them from receiving penicillin therapy when it became available after the Second World War (see also Howell in this volume). Every practitioner who talks to an AfricanAmerican patient about a new treatment or, especially, inclusion in a clinical trial needs to remember this ugly story and be sensitive to overcoming its legacy of suspicion. Patients are quick to say, 'I don't want to be a guinea pig.' It may take a little longer to explain options, reasons, and relative risk in a way that patients understand; but only with those explanations will they become able to make the best choices for care. History can give the younger practitioner a sense of cycles in medical experience that otherwise might come only after decades of practice. The early 1980s was a halcyon period in the developed world, when infectious diseases had become a minor component of medical culture. Medicine had conquered the bacteria with antibiotics and many of the viruses with vaccines. Infectious diseases were of historical interest to be sure, and still held sway in developing countries. But the time was long past when physicians in America or Great Britain routinely saw young people die of fevers, as they had, say, during the great cholera epidemics of the nineteenth century. And the time was past when doctors felt particularly threatened by their patients. Practicing medi-

234 Margaret Humphreys

cine was no longer dangerous, as it had been, for example, in yellowfever-wracked New Orleans in decades gone by. A new disease was about to shatter this complacency (see also Bryan in this volume). In Boston, the first AIDS cases tended to cluster in the Deaconess Hospital, located near the gay community in the Fenway and staffed by physicians who were interested in this strange new disease. There I saw my first case, in 1983. We medical students were gowned, gloved, masked as we approached the bedside of a gorgeous, blond youth, on a respirator, dying of pneumocystis pneumonia. So this is what it must have been like, I thought, to watch the otherwise healthy young die quickly of yellow fever, influenza, cholera. The helplessness. And the fear. Today AIDS in America is controllable, if not curable. But as organisms acquire ever more resistance to our armamentarium of antibiotics, it may be that today's medical students will spend much more time in their future careers standing helplessly around such bedsides. Once again, the ethics of avoiding contagious patients may arise, as it has for some surgeons who still refuse to operate on HIV-positive patients. It is also a useful exercise to talk through how our response to a recurrence of an epidemic, such as the 1918 influenza outbreak, could modify the original outcome of high mortality. That illness was characterized by respiratory failure from lungs that became sodden and nonfunctional. I ask my classes, 'How many respirators are available in Durham, North Carolina? How quickly would all be in use if this epidemic returned? Or if the severe acute respiratory syndrome (SARS) erupted here in North Carolina, as it did in China and Canada?' Already we are enduring a nursing shortage and it can be hard to get a bed for a patient now, under routine conditions. In other words, we should not be too smug about our ability to meet a disaster of this sort. I suppose history has made me a bit fatalistic. Far from being confident that we as a medical profession would rise to the challenge and conquer it, I realize instead how much our vaunted powers depend on technology that may well be in short supply if the system is seriously tested. Finally, history has made me more aware of the ecology of disease and the co-evolution of human and parasite over time. Different organisms emerge in different historical epochs because of changing ecological factors. Cholera did well in 1848 New York City; the system of water supply and sewage disposal was primitive and opportunities for fecaloral spread were abundant. It would have a hard time today. AIDS, on the other hand, probably would have spread slowly, if at all, in 1848

Beware the Poor Historian 235

New York - no blood transfusions, no modern hemophilia treatments made from pooled blood, no syringes, and a repressive society for homosexual expression. But AIDS flourished in the sexual and medical ecology of the 1980s. As a general internist, I have been bombarded frequently with recommendations by infectious-disease specialists on the appropriate use of antibiotics in common infections. Yet the problem is that a study on, say, the use of a given antibiotic for bladder infections conducted in 1994 may not apply to bacteria in 2003. How can we know the degree of resistance that may have arisen since then? The studies are static; the organisms evolve. In response, the prudent practitioner must try to do two nearly contradictory things: remember and evolve. Good historians make good patients, and they make even better doctors.

We Are All Historians: Thoughts about Doing Psychiatry GARY S. BELKIN

We are all historians. We place ourselves within a set of stories, a train of prior events and purposes, of which we wish to be a part. As physicians, the skills, roles, and knowledge we labor to learn, endlessly update, maintain, and consequentially wield, are set within a story or stories, fundamentally historical, within which they make sense and gain legitimacy. This historical work is so ubiquitous and so basic as to be invisible. The question is not about history's utility to medicine: any physician moves surely, boldly, and even skeptically within medicine because some historically sensible purpose is woven in the background of our consequential work. Instead, the question is what might be gained by being better historians? If all physicians are historians, psychiatrists are the elite of the profession. For us, attention to history is particularly keen. Patient histories are perhaps more crucial and exhaustively detailed here than in other specialties. Indeed, for some psychiatrists, the core of treatment may involve telling, retelling, and reconsidering over many years a patient's version of her own history. Psychiatrists, not uniquely among the other branches of medicine, but much more obviously, need to be open and careful about interpretation of history. They attend to the problems of the distortion of memory, the instability of what counts as 'facts,' the selective uses of some memories or evidence over others, the selffulfilling prophecy in which contingent historical circumstances yield practices that seem fixed and 'natural.' Psychiatrists must contend with how to distinguish the psychological from the biological - the social from the synapse - a task resolved in many different ways over time. Formulation of what is 'social' and what is 'natural/ or of how they define and reflect each other, is also the task of the historian, and it is

Thoughts about Doing Psychiatry 237

particularly relevant to historians of science and medicine. The questions, methods, and concerns that historians bring to these issues about framing the meanings and uses of the past resonate with the tasks and dilemmas of doing psychiatry. Pickering (1985) and Pickstone (2001) provide good expositions of the general sort of sociology of scientific knowledge that I tend to adopt, one which emphasizes curiosity about how these categories remake and infuse each other in varying ways over time. Our private histories as physicians sustain, and thus can also be turned around to question, large issues: for example, how and why health care is practiced in certain ways rather than others; or how and why health care invests in some lines of investigation, explanation, and development over others. When set in a historical perspective, medicine is more than narrated or celebrated: it is revealed as a more arbitrary, complex, and uncertain creature of culture than our private histories tend to allow. Historical research can question the priorities, relative value, or inevitable appearance of our increasingly biotechnological way of knowing. A historical perspective, one that sees in the present, shifting and evolving conditions put forward into uncertainty by an intrusive past, colors how I 'do' psychiatry. But pointing out how a historical view can rewrite 'the big picture' still begs the question of the utility in unveiling the histories behind the curtain. Laying bare and exploring the histories that we each assume should also, if not primarily, affect our work up close, in the smaller strokes of individual patient encounters. I could offer many examples. But one especially comes to mind. My Patient: Robin She came to us from jail.1 Her alleged crime was essentially being a nuisance, pursuing and lobbying members of a local house of worship to permit her to lead religious services in the basement of their congregation. Musician and elite college graduate, she dreamt that God's plan for her was to lead worship based in music as the source of prayer. This became her calling. Moving about the country, she attempted to identify places where she could have space and permission to lead such services for those interested. Her enthusiasm blurred into trespass and earnest, though nonviolent, harassment. At one place after another, she was asked to leave, and eventually was barred. I was immediately struck with her intensity. Robin was an animated

238 Gary S. Belkin

speaker; her whole body expressed the detailed and tightly constructed, rapid-fire logic in her argument for the future of proper worship. Her stamina and seemingly endless capacity to concentrate only on these issues were impressive. Every conversation, every reference, returned to assertion of her mission. Inquire after her family and they were criticized for not joining her work. Suggest she attend a certain therapeutic group or other activity in the hospital and we were interfering with prayer essential to her purpose. Ask how was dinner, and the subject immediately turned to the nourishment afforded by a religious life. All roads led to Rome. The flight of a bird outside her window, or offhand comments by staff, could have direct meaning and prognostic significance for her next move with the local congregation. As Robin railed against her confinement, failure to heed these signs could convey serious anxiety and physical burden. It was impossible to touch on any subject of conversation other than how I was a barrier to her religious purpose. Robin dismissed all consideration of the consequences of her uncompromising approach (such as being homeless and/or in jail); indeed, she seemed blind to them. And she could not see how her life and health were damaged, or anyone else was being inconvenienced, as a result of her wanderings. She did not simply act as if there were no other acceptable opinions; she denied the possibility of other points of view. Robin was also vehemently against medications, about which she knew a great deal. They interrupted the clarity of her prayer, they risked her misinterpretation of God's will, and they reminded her of how unexpected side effects of a medication took the life of one of her parents. That tragic loss continued to wound her. Robin's certainty challenged mine. At first glance, this was no puzzle. She slipped from the competence of college graduation and commercial music success to an essential gypsy existence, oblivious to the perceptions of others. She adopted a literally 'magical' and highly personalized understanding of commonplace events unrelated to her - clinically described as ideas of reference. Robin's fixed beliefs of privileged agency in the face of easy falsification by evidence could be called - delusions. These ideas and behaviors offered the typical pairing of functional decline and psychosis that pointed to schizophrenia. Her emotional intensity and its perhaps cyclical variability struck some observers as the motor that drove the referential and delusional indications of psychosis; they raised the alternative suggestion that she suffered from bipolar disorder, or from both clinical pictures, pointing to schizoaffective

Thoughts about Doing Psychiatry 239

disorder. I have often routinely tested this diagnostic triad by watching patient response to treatment over time. That was easy. More difficult was deciding if fitting a diagnosis was the best way to understand her at all. Robin's lifestyle had declined, but what about her 'functioning'? She had been all over the world - to Israel and to many cities across the United States. Her beliefs were fixed, but were they false? Her inability to see herself as others might was infuriating, narcissistic, but was it psychotic? She chose odd and seemingly irrational sources from which to draw information, validation, and a measure of her successes, failures, happiness, and appropriateness. Certainly, they were idiosyncratic, but were they pathological? What exactly was pathology in this case? Her religiosity did not belong to a denomination, a larger practice and group of believers; but did that make it a hallmark of disease? Robin offered the surface of conventionally designated disease. Medicine, no less than any other complex endeavor, organizes what it does in routines and standardized practices that for the most part capture knowledge and interventions that 'work.' Medicine above all, though, needs to always be open to as wide and deep a view of the particulars of a situation. Its practitioners need the skills to invite the uncertainty and experience to tame them, skills that come from stepping outside the routine to scrutinize how and when it works. But that can, at times, cast the routine as contingent, and knowledge as contingent and unstable as well. Reliable answers and formulations may summarize a lot of what we know but do not exhaust what is knowable, or is relevant to know, in order to understand and help any given patient. History offers a platform from which to start to engage the instability that comes when dwelling on patients who draw us into the complex uncertainties that lie under the surface of the general effectiveness of our work. This was one such patient. Further questions had to be asked: the series of 'why?' questions that are often ignored in clinical care, mostly because they are rarely needed for relief or treatment. 'Why' questions unravel the whole shape and certainty of what I could say I 'know/ When an inquisitive child begins with 'Why is the sky blue?' a rational explanation in reply will be followed by further questions: so why are those molecules that bend light there? why did it come to happen that way? etc. You can quickly find yourself in an abyss of unanswerable questions for which your expertise no longer helps and looks very small. Why was Robin's thinking a 'delusion'? Her behavior 'schizophre-

240 Gary S. Belkin

nia'? Her life's work a 'pathology'? The criteria-driven menu that characterizes current psychiatric diagnostic practice is captured in the Diagnostic and Statistical Manual, version IV (DSM-IT/). For me, the DSM has always been a convention of variable value, permitting and describing an uneven connection with experienced reality. Its historical appearance underscores and helps to guide one through its uses and misuses. For the diagnoses that it contains, a checklist describes types and frequencies of specified behaviors and feelings, such that a group of people who fit that checklist may tend to share a certain course of experience over time and a response to certain treatments that will alter that course. A blunt instrument to be sure, it works more convincingly for some than for others, and it is variably applied. Histories of the evolution of this form of diagnosis and pathological classification have emphasized two major themes. First, partially arbitrary choices in making scientific classifications can eventually create practices that reinforce and seemingly confirm the 'naturalness' of those classifications. Second, the particular move to this kind of disease classification in psychiatry was advocated by a minority of the American Psychiatric Association at a particular period of time about a quartercentury ago. The development of the DSM coincided with historically contingent pressures for standardization and 'inter-rater reliability,' which were themselves part of larger trends in the industrialization and commodification of medical practice that progressed through to the twenty-first century (Belkin, 2003; Wilson, 1993). History offers a critique of such developments, a caution as to the stability of regimes of knowledge over behavior and mental illness. It prods us to pay attention to the underlying rumblings, the changes, purposes, motivations, and assumptions, which make such knowledge 'work.' When it comes to dealing with and describing the mentally ill, enlightenment has too often been proclaimed by one generation only to be dismissed by the next. Understanding these shifts - and little is needed to see them as more than just about advancing science, but about changing culture - might suggest pessimism about the effectiveness of psychiatric work. For me, though, such understanding offers insight, rather than discouragement, flexibile and imaginative, rather than rote, application of the latest solutions. That is because the task to which my clinical skills are put is, at bottom, essentially historical in nature - how to draw lines between what is social and what is natural, between what we construct to suit needs and interests and fears and prejudices, and what reflects the very structure of our biological being.

Thoughts about Doing Psychiatry 241

Fully accepting the historically shaped purposes of the diagnosis system that I must use enables it, and me, to be more effective - focused on the purposes for which it was created and connecting those purposes (or dismissing them as irrelevant) to the one at hand. In a strange way, the uncertainty that history opens is orienting, not disorienting. Another Patient: Mary Along with helping us to understand how knowledge and practice change, history also points to things that seem to endure. Robin's story reminded me of another, poignantly told by historian Laurel Thatcher Ulrich, about a young woman with religious preoccupations. The 'derangement' of early nineteenth-century American Mary Sewall is known to us only through the diary of her father and its re-creation by Ulrich. Like me with Robin, Ulrich was fascinated by Sewall and the inextricable relationships between strands of theology, biology, and the individual biography in her tale: The heart of this paper is a story. It is not a pleasant story, nor is it an easy one to interpret. It is a story about religious anxiety and scientific optimism, about paternal care and patriarchal control, and about the spread of famous cures to small-town New England. Mary Sewall's story interweaves religious history, medical history, and family history, themes ... too often kept separate. (Ulrich, 1992, 168)

Mary's alarming derangement was poorly understood, or treated, as a spiritual or a physical malady. Her surprising attachment to a local Shaker community, and especially her thirty-five-mile unattended walk to join it, seems to have sealed her father's impression of disordered thinking. In these diary pages, he comes across as a taciturn man who seemed to value his daughter's achieving a correct religious commitment more than he did her life. He saw her behavior as an insubordinate struggle against that commitment and his authority to shape it, but he also employed physicians, physical treatments, and somatic explanations for her derangement. In the end, those treatments - of isolation, movement restriction, purging - appear to have caused Mary's death. Diagnoses and definitions of symptoms reflect much that psychiatry knows - that is, much that can be translated into predictions or interventions that may help change behavior and relieve suffering. But the reflection is only partial: abnormality, especially in psychiatry, reflects

242 Gary S. Belkin

what rises to the surface of concern in the context of a specific time and place. Which behaviors or changes in behavior matter, and how they matter, is to a large degree tied to experience in, and the structure of, the social world. Even if psychiatry could eventually be based, like other medical disciplines, on tissue pathology and specific changes in the brain, what 'counts' as illness will be to a large degree framed by culture. In turn, culture will continue to be changed by how we manipulate the brain. Why and when a difference becomes disease reflects as much about historical circumstances as it does some timeless characteristic of nature. Mary's last months capture a recurring theme: commitment to religious and spiritual identities complicates scientific accounts of human behavior. For Mary's father, medical explanation or treatment was framed within expectations and interpretations of her moral conduct and salvation. Her story illustrates how the very notion of 'treatment,' especially as it involves interpreting the fundamental experiences of others, is inextricably woven into assertions of power and control. With Robin, was I merely recapitulating this theme? Attention to these effects of my actions wasn't shaming, but clarifying - what clinical approaches might usefully explore the relationship between the unfolding of Robin's experience to the norms of others? The arbitrariness of diagnosis and the coercion of treatment are not easily wished away by the scientific convictions of a particular era. History underscores for me the need to face openly the social enforcement aspects of psychiatric work. The ways in which science clarifies or confuses that role over time are not an indictment of the effort but a note of caution and honesty about what I am actually doing to someone, to this patient, with my data, experience, and understanding. My Decision In the case of Robin, my task was court-ordered and served a particular public function: I was to assess her ability to understand the legal charges against her, to opine about the role of mental illness in responsibility for her actions, and to predict her future dangerousness. Robin could cite the mental health law better than I could. But she considered her own legal situation and the stratagems of her attorney as a sideshow, an inferior and far too mundane set of concerns irrelevant to her higher preoccupations, and meaning little when compared with the long-term view of her purposes. Did this understanding imply that she

Thoughts about Doing Psychiatry 243

failed the competence standard of being able to appreciate her circumstances and confer meaningfully with her attorney? She had no regret for the things she had done, and, as she experienced it, she had no real 'choice' in either her prior or her unabashedly committed future pursuit of her goals. Robin needed to follow God's will, and she urged me to do the same, insisting strongly and repeatedly that I tell this story. Did this commitment compromise her ability to 'appreciate' and 'conform' to norms of behavior, thus absolving her of responsibility for her actions? Did the intensity of her harassment and continued trespass make her dangerous? Robin's diagnosis was not a trivial act. It was a point to which I constantly returned because it could cast all of the characteristics of her understandings and intentions within the orbit of a mental illness; it could open the door on radically different consequences in her journey through the judicial system. She pushed the envelope of every line to be drawn. Clinical terms were used at their own peril without careful reflection and scrutiny. Religious ideas especially challenge the precision with which psychiatric diagnosis labels unusual thoughts versus disordered capabilities of thinking, knowing, and acting. The realm of the spiritual is, in part, a space of culturally sanctioned 'madness' and supernatural belief. In Mary's time, as in ours, religious communities are often the first to identify the ill versus the overzealous. But it has never been an easy task. Attempts to do so underscore how the vocabulary and background of psychiatric concepts mirror socially acceptable ways of including the transcendent in our lives. They highlight a persistent ambiguity and ambivalence about managing 'madness,' despite our considerable powers and tools - an ambiguity with a long heritage. In his diaries, the famous nineteenth-century Russian surgeon Nikolai Pirogov (1810-81) wrestled with the possibility that scientific medicine too swiftly silenced other ways of knowing: Is all that surrounds us truly comprehensible and clear to us? We have only become used to it, and the constant illusion, with which we revel in life without thinking about its impenetrable mystery, protects us from the passions of an almost emotional belief in miracles, anxiety, and madness. (Pirogov, [1910] 1990,142)

However, we should not succumb, at the other extreme, to some romanticized cordoning off of the slippery parts of our experience and behavior that are hard to explain. The clinical task is to include and

244 Gary S. Belkin

engage, not to parcel out from science that which it cannot fluently master. It is precisely the ways in which people suffer over, or become disorganized around, or violent in the name of, their 'impenetrable mysteries' that command the attention of the psychiatrist. But taking on this task requires the careful and honest recognition (and curiosity) of psychiatrists as to how their work participates in shaping, and is shaped by, our social, historical world. Robin felt that she knew God's wishes, but she did not hear him - she did not hallucinate. What Robin believed was reasoned through in great detail, and it was referenced and extrapolated from accepted doctrine. She believed in miracles; faith was her life and her constant self-reflection and reference point. Delusion is a term that can buckle after a few 'why?' questions. Officially, a delusion describes a fixed, false belief maintained despite contrary evidence. Religious beliefs, and many other beliefs, are held despite such 'evidence.' Why should a definition of pathology be rooted in a common departure from concrete, idealist rationality? The answer is clinically and historically complex. How delusion became associated with the metaphor of error is a multi-century story. Other interpretations are, and were, possible. It was in them that I found more direction with which to ask the kinds of clinical questions about this patient best suited to her and to my acknowledged police role. The historical purposes of reliability and prediction behind the form and content of the current DSM did not fit with either role in this case. In particular, Karl Jaspers emphasized the context of experience and conditions of thought production that make a 'delusional' belief actually quite logical, even proven from the patient's point of view (Mojtabai, 2000). In tension with the push to ontologically demarcate illness in discrete, standardized diagnoses, clinical practice also attends to distress or difficulty caused by the unique ways in which patients make sense of themselves or position themselves with reference to others. 'Religiosity/ in clinical parlance, should reflect more than heightened religious preoccupation; instead, it should refer to distortions of individual agency and power, and the perceptual machinery relied on to form such beliefs. It can often be a treacherous line to draw. My management of this patient was informed and liberated by putting the task of modern diagnosis in perspective and to the side, by focusing on a deeper meaning of delusion as a description of another worldview, and by seeing and accepting myself as a participant in a

Thoughts about Doing Psychiatry 245 social triage using police power that relies on clinical experience to reveal other agendas. She was discharged. Further Thoughts Jaspers's call to focus on Robin's own context of experience seemed a better basis for prediction and explanation than, for example, the DSM, or an idealist formulation of 'competency' or 'responsibility' certifiably compromised by an official diagnosis. This insight did not deny what those formulations might offer, nor did it refute the crucial importance of understanding and mastering how a few milligrams of medication can literally save the life of someone who could fit the same diagnosis as she. It did not claim that the practice of psychiatry, or medicine in general, is a random selection of faddish formulations chosen a la carte from the experiences of prior decades or centuries. History sets out neither to prove that the emperor has no clothes nor to validate current practice as the logical and only outcome of the reliable march of science. It can be used in either way, and in between. That is why historians have debates. Within those debates, clinicians can find broader understanding of why medical practices or observations are varyingly tied to particular times and places. For example 'hysteria' has had a relatively short half-life and specific context(s), while 'mania' is a more enduring diagnosis (although a very interesting and nonetheless shifting one). This understanding can only enhance the range of tools and depth and sophistication brought to bear in encounters with individual patients. My choice of what to use and what to reject was informed by openly seeing the tools and perspectives I had as partial, with their own baggage and histories and purposes, and thus more easily compared and weighed. A DSM-IV diagnosis, or an existential psychotherapeutic formulation, each carries with it contingent circumscribed powers of explanation, useful and used for different reasons, in different contexts. At the same time, they carry with them connections to what are perhaps more enduring challenges, such as ambiguity over the extent to which psychopathology explains our lives and the coercion often inherent in making that so. History can help see both. I should also state that I did not discharge this patient out of respect for her 'autonomy' in the absence of a legally restricted formulation of dangers prompted by her release. I did what I judged to be in her best

246 Gary S. Belkin

interests. Bioethics was born out of the critique that medicine was to a large degree the incarnation of specific social norms and subjective judgments as to what was best for patients. It argued for enhancing patient autonomy and curbing the physician-expert with a moral expert. Ironically, that same critique could point to opposite conclusions. The sociality of medical knowledge, its vulnerability to context, arguably points to relying even more on physician expertise, and to greater insertion of experienced judgment with which to navigate these unstable waters. Might not this refining of judgment be the glue that holds a historically contingent practice together? Obviously, abuses of authority and the importance of medical choices demand attention to the principles that bioethics elaborates. But the real world complicates such formulas (Hoffmaster, 2001). That is why bioethics may ultimately be less instructive for talking about ethical dilemmas than history (Belkin, 2001). Bioethics is presentist: it seeks to apply static norms to situations that are the front end of dynamic historical processes. To wrench clinical choices from their context in order to subject them to separate examination of moral propositions risks missing what history emphasizes: that is, a focus on the ways contexts work; the interactions between social forces, medical power, and medical benefits; and greater precision to characterizations as to what persists and what changes about clinical knowledge and authority over time and place. Exploring these things can lead to a better grasp of what that elusive art/science of 'clinical experience' is or should be. Practicing psychiatry means accepting that the tools and skills that relieve enormous suffering and empower many people's lives owe their success to a kind of bargain with the contingencies of culture and history. In psychiatry (and medicine in general) resides a prominent source of control and authority. The training, honesty, and comparative perspective needed for such work can be sharpened by being the best historian possible. Historical perspectives for me have offered comfort and optimism as they reveal and expose how clinical expertise is an odd, creative combination of rigorous, empirical observation and accumulated judgment. It is a highly consequential social act, the features of which include contending with blurry knowledge and the hard-to-avoid role of enforcing core values. In the United States, in response to these historically robust features, managed care and bioethics moved to limit the importance of clinical judgment in favor of standardized measures and formulas. Vibrant historical perspectives that encourage self-reflection within medi-

Thoughts about Doing Psychiatry 247 cine, rather than ahistorical ones seeking to tame it, might better inform how and when the clinical practice of medicine should work best. NOTE 1 While Robin urged that I tell her story, I have altered various identifying characteristics, including possibly her gender, to respect confidentiality. BIBLIOGRAPHY Belkin, Gary. 2001. Toward a historical ethics. Cambridge Quarterly of Healthcar Ethics, 10: 345-50. - 2003. Shifting the focus: the historical meaning of managed care and the search for ethics in mental health. In James Lindemann Nelson, Gregory E. Kaebnick, and Daniel Callahan (eds.), Rationing Sanity: Ethical Issues in Managed Mental Health Care. Washington, DC: Georgetown University Press, 9-27. Hoffmaster, Barry (ed.). 2001.Bioethics in Social Context. Philadelphia: Temple University Press. Mojtabai, Ramin. 2000. Delusion as error: the history of a metaphor. History of Psychiatry, 11: 3-14. Pickering, Andrew. 1995. The Mangle of Practice: Time, Agency, and Science. Chicago: University of Chicago Press. Pickstone, John V. 2001. Ways of Knowing: A New History of Science, Technology and Medicine. Chicago: University of Chicago Press. Pirogov, Nikolai Ivanovich. [1910] 1990. Questions of Life: Diary of an Old Physician. Canton, MA: Science History Publications. Ulrich, Laurel Thatcher. 1992. Derangement in the family: the story of Mary Sewall, 1824-1825. The Dublin Seminar for American Folklife Annual Proceedings 1990.Boston University Press, 168-84. Wilson, Mitchell. 1993. DSM-III and the transformation of American psychiatry: a history. American Journal of Psychiatry, 150: 399^10.

This page intentionally left blank

Confronting Futility

This page intentionally left blank

Timeless Desperation and Timely Measures JOEL T. BRASLOW

'What use/ overworked medical students and psychiatry residents often ask me, 'is knowing the history of medicine?' This question is not due to lack of intellectual curiosity, as most of these students are passionately caught up in their medical studies. Instead, it reflects their urgent desire to care for and treat their suffering patients in immediate and practical ways. By way of response, I tell them that what we do as physicians is shaped not only by the nature of illness but also by historical, cultural, and social circumstance: rather than part of the natural world, clinical practices are historical products that depend upon time and place. History allows us to understand why our presentday medical world is as it is, and encourages us to realize that patient outcomes are shaped by more than pathophysiology alone. Through this, I tell them, history helps us to be more thoughtful physicians. I believe this to be an adequate intellectual explanation of why I believe history to be of value. It is, however, too abstract for the purpose of explaining my personal experiences, ones in which I have tried to make sense of history while continuing to treat and care for patients. My career choice of clinician-historian was motivated by questions about the practice of medicine that were at once personal, intellectual, and clinical. Many of these questions have their roots in my childhood and adolescence, when my physician parents unknowingly sparked an early interest in the intersection of history and medicine - one that would lead me along a gradual career path from medical student and psychiatry resident to graduate student of history and, finally, clinicianhistorian. The explanation that I give to students fails to capture what has been for me an intensely personal process of making sense of therapeutics, diagnosis, and the value of psychiatric care. In the pages

252 Joel T. Braslow

that follow, I recount some of the stories that surface when I reflect on this process and its implications for the care of psychiatric patients. Doing What 'Works' My father was an enthusiastic surgeon, to say the least. His influence on my choice of careers was in part prescriptive - he told my six siblings and me that we could do anything we wished after medical school, and five of us dutifully postponed our self-expression until it came time to choose an internship. But this explanation does not capture the extent to which his passion for medicine engendered my own interest in medical practice, not only as a career but also as a subject of historical inquiry. When I was a child, his belief that treating the sick was the highest form of humanitarian service was conveyed to me most memorably at the dinner table, where he often recounted his surgical exploits. The story that left the most lasting impression was also one of his favorites, perhaps because of his brush with fame. While serving a brief stint as a surgeon at Camarillo State Hospital in the 1950s, my father learned to perform a transorbital lobotomy from Walter Freeman. Freeman, a neurologist at George Washington University, was the most visible and ardent proponent of lobotomy in America. With his neurosurgeon colleague, James Watts, he had performed the first lobotomy in the United States in 1936. Ten years later, after experimenting on cadavers with an ice pick, he perfected the transorbital lobotomy; it required little or no surgical expertise and could be done in much less time than other methods. In his eagerness to promote the surgery, Freeman traveled to nearly every state mental hospital (Freeman, 1948; Pressman, 1998; Valenstein, 1986). My father described the procedure with a certain amount of flair and drama: 'One takes a thing that looks just like an ice pick and positions it right above the eye. Using a hammer, the pick is pounded into the skull. Then ping! the bone breaks enough to let the ice pick slide easily into the patient's brain. You then swing the pick back and forth, cutting the nerves that connect to the front of the brain. That's it.' For my father, this memory and its recitation reaffirmed his skills as a surgeon and his identity as a healer; in spite of lobotomy's infamous history, he told the tale with pride. For me, the story was more ambiguous: I wanted to identify with him as a physician, but increasingly I wondered how my father's desire to heal coexisted with his performance of this seemingly mutilating operation. This contradiction niggled

Timeless Desperation and Timely Measures 253

at me throughout my medical education. The fact that lobotomy was widely hailed as a major therapeutic and scientific success in its heyday did little to lessen my curiosity (and, not infrequently, my distress) about how well-intentioned physicians, and especially psychiatrists, have done what they have in the name of therapeutics. Much of my subsequent scholarship in the history of medicine has tried to answer this question that had its origins at the family dinner table. My career path was not as straightforward as this early curiosity suggests. I entered medicine with conflicting desires, neither of which I would have admitted to readily: first, to identify with my father the surgeon; and second, to rebel against medical authority, which for me was embodied by his habit, only half-joking, of reminding me, my siblings, and my mother that he had been wrong only once in his life— at the age of five. After medical school, I chose an internship in pathology, which shared surgery's expert invasion of the body but was more solitary and intellectual, without the arrogance that I associated with surgery's drastic life-saving interventions. But slicing body parts, live or dead, was not for me, and I traded the flesh, blood, guts, bones, and scalpels of my father's 'real' medicine for the thoughts, feelings, minds, and talking cures of psychiatry. In choosing a psychiatry residency, I found myself drawn to psychoanalytic theory and practice, in part because of its emphasis on one's past in shaping his or her present, but also because it gave further expression to my rebellion against the physical world of 'real' medicine. However, soon into my training I found that I was most interested in treating patients who were severely ill and thus most in need of my help. I became troubled by the limitations of psychodynamic psychiatry in treating these patients; at the same time, I was deeply curious about the relatively recent eclipse of psychodynamic psychiatry by biological psychiatry. Psychoanalytic thought and practice had dominated American psychiatry for a brief period in the 1950s and 1960s. But over the preceding two decades, psychodynamic psychiatry had become increasingly marginal to mainstream psychiatry. This decline was brought about by the rise of psychopharmacology (thanks in large part to the power of the pharmaceutical industry and its influence on psychiatric science and practice); the explosive growth of neuroscience; changing standards of what counts as acceptable clinical evidence; and broader sociocultural and economic changes (Hale, 1995; Healy, 1997, 2002). Many of my psychoanalytic supervisors offered self-interested pronouncements about the insidious nature of biological psychiatry, but I

254 Joel T. Braslow

wondered what this shift towards the body and away from the mind meant from a less partisan point of view. I started asking myself unsettling questions about my work with patients: To what extent did my use of a particular therapy influence my relationship with an individual patient and how I understood his or her illness? What effect did treating a patient with a biological intervention have upon his or her selfperception? It was these concerns - born out of my own clinical experience - that drove me to examine psychiatric practice from a historical perspective. These questions became not only more compelling but also more complicated, as I continued to take care of patients while working on a PhD in history and, consequently, as history increasingly informed my clinical practice. This intersection of the clinic and history is best exemplified by the most emotionally challenging experience I had as a clinician. Near the end of my research training in history, my clinical responsibilities entailed taking care of inpatients on a 'dual diagnosis' ward (addiction plus psychiatric illness) of a Veterans Administration hospital. There I encountered James. Typical of the patients admitted to this ward, James was poor, single, middle-aged, and African-American. He had a longstanding diagnosis of chronic paranoid schizophrenia and had relatively recently developed a problem with cocaine abuse. He lived what seemed to me a dismally lonely existence in a small, though poorly supervised, board-and-care home. His family members were marked only by their complete absence, never visiting or inquiring as to how James was faring, perhaps because they had long ago given up hope that he would ever recover his old self. My relationship with James began during the last of his many admissions to the hospital. I knew little of his past, aside from the fact that sometime around his discharge from the military he had begun hearing voices and had become increasingly frightened that people - though he was vague as to who these individuals were - intended to harm him. When the voices and terror of others became unbearable, he turned either to cocaine or to thoughts of suicide. When I met him, he had come voluntarily to the hospital's emergency room, pleading desperately for someone to quell the voices that were tormenting him again. His expressed wish to die had resulted in the psychiatry resident on call placing James on a '72-hour hold for danger to self/ admitting him to the hospital 'against his will.' On our first meeting, James found it difficult to look at me directly, and he averted his glance whenever our eyes accidentally met. He had

Timeless Desperation and Timely Measures 255

what is called a 'masklike fades' and a shuffling gait, symptoms that made him look as if he had Parkinson's disease, but, in fact, were caused by haloperidol, the antipsychotic drug prescribed for his schizophrenia. He also displayed barely perceptible involuntary movements of his mouth and tongue that betrayed the onset of tardive dyskinesia, a common, cruel, and difficult to reverse side effect of the antipsychotic drug. First noticed in the 1950s, tardive dyskinesia had its own thorny history before it was generally accepted to be a serious problem in the 1970s (Gelman, 1999). As the visible manifestations of James's treatment suggest, haloperidol and drugs like it are not necessarily pleasant to take. Now he rarely took the medication, being especially troubled by yet another side effect: a sense of almost unbearable inner restlessness called 'akathisia.' When in the hospital, though, James usually acquiesced to his doctors' wishes. On this visit, he even - albeit reluctantly - consented to an increase in medication after the nurses complained that he was frightening the staff and other patients with what was vaguely described as 'threatening behavior.' Prescribing this drug was my primary responsibility in caring for James, as attention to his psychological state had been relegated to psychologists, social workers, and nurses. I saw James only for brief periods, and then only to inquire as to whether the side effects were too intolerable, whether the voices were better or worse, and whether he still wanted to die. After a couple of weeks, his despair had abated (or so I thought) and his behavior no longer threatened an eruption of violence toward his fellow patients and staff. Thus, I had no misgivings about returning him to his boardand-care home, thankful that he had a place to go other than the street, which was home for so many other patients. I saw him after his hospitalization for two 'medication visits,' meager twenty-minute allocations in which I had little time except to ask again if his psychotic symptoms had worsened or improved, if he wanted to kill himself, or if the side effects had worsened. I never inquired into the details of how he spent his days, whether he truly lived a miserable life in the board-and-care, or what the more private areas of his emotional world were like. Aside from those fragments of thoughts, feelings, and behaviors that we designate as 'symptoms,' his inner life offered little of therapeutic importance when seen from the biological perspective I had adopted in managing his medications - a perspective that cared more about James's neurotransmitters than about his alienation. I had succeeded in controlling his behavior, but I did nothing for his despair. Several

256 Joel T. Braslow

weeks after his last meeting with me, he fatally shot himself in the head. For James, my knowledge of psychiatric history was of no help at all. In fact, immediately after his death, I wondered whether my historical understanding of American psychiatry, schizophrenia, and psychotropic drugs had actually hindered my ability to care for him. Had comprehending the contingency of my psychiatric knowledge made me too tentative, too uncertain, and too skeptical? Did it get in the way of consoling him enough to prevent his hopelessness from overwhelming him? I quickly fought this fleeting idea with the more comforting thought that I had done all I could. After all, I had thoroughly assessed him as to symptoms, side effects, and suicidal ideation. But his death haunted me. To what extent had my reliance on psychotropic drugs blinded me, influencing my relationship with him until I saw more of the disease schizophrenia - and less of James, the suffering and tormented man? And, most importantly, what might I have done to alter that tragic outcome? As I struggled with these questions and my shaken sense of competence, history helped me find a way to make sense of his death and, hopefully, to become a better physician. I began to see parallels between my father's use of lobotomy and my role in inflicting tardive dyskinesia upon James, a condition that I feared might have contributed to his hopelessness. At first, it was a disquieting comparison. Was I blinded to my patients' best interests, just as a previous generation of lobotomists had been to theirs? A conversation with my father shortly before his death in 1996 pointed to an even deeper similarity, but one that made me less uneasy. I asked him why he had so enthusiastically embraced the surgery. His answer was simple: 'Because it worked.' For my father and his contemporaries, lobotomy 'worked' within the specific context of overcrowded and understaffed state hospitals where physicians' primary measure of therapeutic effectiveness was the control of behavior. And, if nothing else, lobotomized patients were less capable of the enormously disruptive, frighteningly irrational, and, not infrequently, violent behaviors that they had displayed before the operation. Physicians who performed lobotomies did so after weighing what information they saw as relevant and deciding that the benefits outweighed the risks, much as I and my contemporaries do in deciding whether to prescribe antipsychotic drugs for patients like James. Understanding contemporary clinical practice requires an appreciation of the cultural and social contexts in which patients live and clini-

Timeless Desperation and Timely Measures 257 cians practice, just as understanding lobotomy requires a grasp of the nature of the state psychiatric hospitals of a half-century ago. Following the introduction of chlorpromazine (marketed as Thorazine in the United States) in 1954, it and the other 'antipsychotic' drugs that followed not only replaced lobotomy - the surgical procedure that had 'worked' so well within overcrowded state hospitals - but also made possible the political dismantling of the vast network of state-funded institutions that had housed and cared for a resident population of over half a million patients at their 1950s peak. The now-accepted name of 'antipsychotic,' with its implied specificity for psychosis, obscures the early history of these drugs. At first, psychiatrists used them primarily as allpurpose 'major tranquilizers'; only in the late 1960s were the indications winnowed down to psychosis alone (Caldwell, 1970,150-1; Grob, 1991; Swazey, 1974). Contemporary state hospitals are bare whispers of their former 1950s mammoth glory, and patients like James have been left to fend for themselves on the streets, to languish without treatment in prisons, or to be neglected and forgotten in board-and-care and nursing homes. Moreover, the success of the antipsychotic drugs gave rise to our current psychopharmacological age, in which the drug treatment of nearly every nook and cranny of our psychological lives is a multibilliondollar industry. It is this context that treating James with haloperidol not only 'worked' (until he killed himself), but it was the only alternative for both of us. For James to be able to stay out of the hospital and live in the community - in his case, in a board-and-care with no diversions and scant supervision - controlling his behavior as well as his psychotic symptoms with haloperidol was critical. Thus, my knowledge of history did not affect what I was able to do in caring for James, but it did allow me to put his tragic fate into a larger perspective. Reflecting on my own clinical practice as a consequence of historical circumstance, I saw that it consists of little more than trying to do what works best within the clinical, social, and therapeutic realities that surround both me and my patients. Seeing my clinical practice as historically contingent was both comforting and humbling. I saw that the logic of my prescription of haloperidol was just as embedded within a historical and cultural context as any earlier doctor's decision to lobotomize a patient. While I began to understand that I had done all that I could for James, I was also cured of any hubris that I might have had regarding contemporary psychiatric science and practice. This historically informed understanding has made it impossible for me to

258 Joel T. Braslow

make moral judgments of lobotomists' solutions to the clinical problems that confronted them a half-century ago. Real Patients versus Real Diseases It is perhaps not surprising that my own interest in the history of psychiatry was sparked by lobotomy, the most notorious of the 'heroic' somatic therapies that characterized psychiatric care in the mid-twentieth century. These therapies, which also included hydrotherapy, insulin shock therapy, electroconvulsive therapy malaria fever therapy, and even sexual sterilization and clitoridectomy, commonly stir up a peculiar kind of curiosity, one that is at once lurid and distancing. While we wish to understand why physicians chose to use these therapies, our horror at their having done so induces us to dismiss this checkered history as a relic of an unenlightened and unscientific past. Perhaps out of a desire to absolve my father, the lobotomist, and also out of a critical tendency toward present-day medical practices, I found myself unable to dismiss earlier practices in this way. I instead wondered whether these doctors were really so different from those of today. As my experience in treating James suggests, becoming a historian of psychiatric practice (and, in particular, of somatic therapies) made me less reflexively confident in the therapies that I employ as a clinician. This has forced me to be a more thoughtful clinician, and to see psychiatric practice as a matter of treating patients with compassion while trying to do the best for them that therapeutic and social circumstance allows. Thus, in history I have found something of a cure for my own particular disquiet in treating patients, an experience that contributed to my belief that historical knowledge makes for better clinicians. Despite my conviction that the history of medicine has clinical relevance, I have found that teaching history to psychiatry residents poses a special challenge. These newly minted physicians are especially eager to grasp onto the idea that psychiatric illnesses are discrete, ontological entities, grounded in the seemingly more 'real' soil of biology, rather than a complex interaction of the sociocultural, historical, psychological, and biological. However, the last fifty years of American psychiatry provides little solace for those seeking such stability. The nature of psychiatric 'facts' - what counts as disease, a good outcome, an effective treatment, or even psychiatric science - has changed dramatically in the last half-century and continues to change. In the 1950s and 1960s, American psychiatry was dominated by psychodynamic theory and

Timeless Desperation and Timely Measures 259 practice; and psychiatric illness was largely seen as dimensional, with the normal and the pathological distinguished by degree rather than by kind. With the eclipse of psychodynamic psychiatry by biological psychiatry in the 1970s and 1980s, psychiatric conceptions of illness increasingly shifted towards categorical classifications in which disease states were discrete, biologically based entities. The publication in 1980 of the American Psychiatric Association's third edition of the Diagnostic and Statistical Manual (DSM) exemplified this transformation. This shift in disease naming was a reflection of the changing sociocultural context of psychiatry as much as (if not more than) it was a result of the scientific understanding of psychological distress. The evolution of psychiatric diagnosis is still a controversial topic in the historical literature: for example, compare the work of Kirk and Kutchins (1992) with that of Horwitz (2002). In my teaching experience, it has been this recent history of psychiatric theory and diagnostics, rather than psychiatrists' use of somatic therapies like lobotomy, that has been especially disturbing to psychiatric residents. I often teach the history of psychiatric diagnostic categories to residents, using the DSM to exemplify the historically contingent nature of psychiatric knowledge and how it is shaped by professional politics, changing cultural values, financial exigencies, and an increasingly powerful and influential pharmaceutical industry. After hearing my interpretation of this history in a seminar, a resident accosted me angrily, nearly in tears, to complain that I was undermining his belief in psychiatry: he had to maintain confidence in the truth of current psychiatric knowledge and its descriptions of clinical experience in order to treat patients; otherwise, he felt paralyzed, helpless, and ineffectual. My intent in teaching the history of diagnostic categories has been to encourage my students to be more thoughtful, contextually aware clinicians. But the distress that I induced in this resident shocked me into seeing that the naive arrogance I sought to temper was in reality a thin veneer of confidence, without which these clinically inexperienced young physicians might feel incapable of practicing psychiatry at all. This experience deeply influenced how I saw the relationship between history and clinical practice, helping me to realize that historical truths can conflict with, and even undermine, clinical exigencies. Nevertheless, and notwithstanding the discomfort that it may cause, a historical perspective also has permitted me to see more transcendent aspects of psychiatry. I have found solace, not in distancing what I do today from what clinicians have done in the past, but rather in seeing

260 Joel T. Braslow

the value of psychiatric care and consolation, past and present. It is this, more than anything else, that marks how my identity as a clinician has been altered by my work as a historian. Even in institutions as maligned as state hospitals, physicians cared for and consoled their patients as much as they meted out remedies. Many of the therapies that they used are now considered inefficacious and even dangerous; however, through my research with state psychiatric records from the past hundred years, I have learned that patients often did improve. This was true not only from the physician's perspective, but also from the perspective of the patients and their families. Because my historical work centers on inpatient psychiatric records from state and university hospitals, I have had access to the intimate details of care, including admission histories, diagnoses, and treatments, as well as the verbatim transcripts of conversations between physicians and interviews with patients. These transcripts generally present proceedings of 'clinical case conferences,' in which patients were interviewed by several staff physicians and sometimes a nurse and or social worker. These conferences took place at several points during hospitalization: at admission, at major therapeutic crossroads (e.g., the decision to lobotomize a patient), and at discharge. One of the case records that I had access to was that of my mother's brief state hospitalization, an event of which I had been dimly aware since adolescence. Her shame over the 'incident' had always kept her from saying much about it, and so when she gave me permission to read the record, I did so with some trepidation, still feeling that I was somehow violating her privacy. I recount her hospitalization here (also with her permission, of course) for a number of reasons. First, it exemplifies a number of the important ways in which my reading of patient records has shaped my understanding of psychiatry. Second, though I have read hundreds of patient records from the first half of the twentieth century, she is the only one of these patients with whom I have been able to discuss both the hospitalization and the record. And finally, reading the record of someone I know so well has shaped unquestionably the ways in which I try to understand the individual patients behind each of the records that I study. My mother was hospitalized at Patton State hospital in 1944, while she was in the midst of her training as a pediatrician and my father was stationed as a surgeon in New Guinea (figure 33). Unbeknownst to the doctors who admitted her, her deep fear that he would not return safely had turned to terror as she became increasingly exhausted working as a

33 Fatten State Hospital, ca. 1900. Courtesy of Patton State Hospital Archives.

262 Joel T. Braslow

resident in pediatrics. She developed a dependency on barbiturates and then abruptly stopped taking them, a cessation which immediately preceded her descent into what could only be called madness. 'She is very fearful and apprehensive/ the admitting doctor wrote. He continued: 'Admits she gets messages, gets very tense, very rigid; when questioned why she does so, states she is afraid she might blow up. Stated the voices tell her to be quiet, to have faith/ But most horrible for her was her conviction that she recently had received a telegram from the War Department notifying her 'that her husband was killed in the South Pacific.' Her stay in the hospital lasted only five days, during the course of which her Very disturbed' behavior, described by attendants as 'Pounding on doors. Will not stay in bed. Unable to reason/ twice required physical restraint in the form of wristlets, handcuff-like devices made of cloth and leather instead of metal. It is not evident from the record what treatments she received. However, when I asked her about her care, she did recall being immersed in a tub of warm water for many hours a day. This treatment was one form of hydrotherapy; wrapping patients tightly in wet sheets, surrounded by a blanket or rubber sheet, was another. Various forms of hydrotherapy were important treatments throughout the first half of the twentieth century (Braslow, 1997). Though these interventions conveniently restrained overly agitated patients, they were also seen as therapeutic and, to my mother's recollection, provided some relief from her suffering. For my mother, there were two sides to this hospitalization: the care that she received and the diagnosis with which she was labeled. Her explanation of how the two had affected her, and what we both learned about her diagnosis upon reading the record fifty years later, undid any lingering doubts I might have had regarding the historical contingency of psychiatric knowledge. But her explanation also reaffirmed my belief in the value of psychiatric care and consolation. The diagnosis that she believed she had been given was dementia praecox (schizophrenia), one of the most severe and unrelenting of psychiatric conditions. She remained frightened for many years that she was permanently psychologically impaired. This fear is remarkable because nothing about her life other than the diagnosis gave her reason to believe that this might be true; in fact, a decade later she and my father worked briefly side by side at that same California state psychiatric hospital, she as an anesthesiologist and he as a surgeon (figures 34 and 35). Perhaps only reading the following transcription, in which her doctors admitted to the uncer-

34 Edithmae Braslow (second from left) and Lawrence Braslow (far left) in surgery at Fatten State Hospital, 1962. Courtesy of Patton State Hospital Archives.

264 Joel T. Braslow

35 Edithmae and Lawrence Braslow shortly after performing a surgery at Patton State Hospital, 1962. Courtesy of Patton State Hospital Archives.

tainty of their knowledge at the clinical case conference preceding her discharge, would have sufficed to spare her years of anxiety: Dr Williams: Do you think she is still a catatonic praecox? Dr Shannon: She sure acted like it when she came; she was very manneristic and catatonic. Dr Austin: She certainly looked like a catatonic praecox then. Today she doesn't give that impression. Dr Williams: I could not see it; I could not fit her in with that. Dr Shannon: Not when she was in clinic but when I examined her. Dr Austin: She said that was in accordance with her religious teachings. Dr Perlson: She could not have been a very religious person if she drank.

Timeless Desperation and Timely Measures 265 Dr Williams: She wasn't sleeping. And too much work. How about revising diagnosis to: Psychosis due to drugs. Dr Austin: She stated that she had headaches and could not sleep. And she said I hope I am not a catatonic praecox. Dr Williams: I don't think the diagnosis makes an awful lot of difference. Dr Beall: She's got her life ahead of her and I'll stick to the original diagnosis. Dr Austin: I am not in favor of changing. She's got to work and make a living. Dr Perlson: I don't believe in getting sympathetic. I think the fact she has been here is the biggest point against her. It doesn't matter what you call her. I don't know what she is because I didn't see her when she came or in clinic. She was exhausted from overwork and not sleeping. Dr Williams: She was dehydrated; not eating. Psychosis due to drugs and other exogenous toxics, seconals. I don't believe she would have gotten that way if she had not been taking the drugs. Will you agree to that Dr Perlson? Dr Perlson: If I had seen her and thought she was a praecox, I'd stick to it. Dr Beall: Psychosis due to drugs and other exogenous toxics, seconals. Dr Perlson: Why not Undiagnosed Psychosis. Dr Austin: That would be the nicest. Dr Beall: That would be all right. Dr Williams: Do you think it would be better on parole? Dr Beall: No better to discharge her. That would worry her. For my mother, this discussion erased a fear that had worried her needlessly for decades, but for me it also nicely illustrated two things about diagnostic categories. First was the tension between diagnosis as a transient versus a permanent state. Had the doctors been mistaken in their initial diagnosis? Was 'a catatonic praecox' something my mother could have once been but no longer was? Or, as her plaintive 'I hope I am not a catatonic praecox' suggests, was the diagnosis one that, if assigned, would always be with her, defining and constraining who she was? Second, the doctors were clearly in conflict over the meaning, purpose, and usefulness of diagnostic categories. Dr Williams, for example, told his colleagues that whatever they decide to name her distress, it would make little difference, although he was convinced that the cause of her madness was a mix of sleeplessness, exhaustion, barbi-

266 Joel T. Braslow turates, and despair, a state made into disease by the label 'psychosis due to drugs.' In contrast, Dr Perlson, who did not 'believe in getting sympathetic/ asserted that 'If I had seen her and thought she was a praecox, I'd stick to it/ suggesting a firmer belief in the certainty of disease classification. Since the 1940s, what psychiatrists deem as schizophrenia has undergone significant narrowing, and psychiatrists today would be very unlikely to label my mother's symptoms as indicative of schizophrenia. Learning the contents of her record and placing both her hospitalization and her diagnosis within a historical context proved to be enormously therapeutic for my mother. It allowed her to relinquish any remnants of what she saw as a 'crazy' fear of going crazy. Talking with my mother about her hospitalization has helped me to recognize an unfortunate difference between what diagnosis means to physicians and patients. As my mother's anxiety over '[being] a catatonic praecox' suggests, labeling is of much greater comfort to the physician than it is to the patient. This realization has made me much less cavalier in applying a label to a given set of symptoms. It has also emphasized the provisional nature of any diagnosis I do affix to a patient. Though I may be less certain of how best to treat or name my patients' ills, my skepticism about the certainty of psychiatric knowledge also has forced me to pay more attention to what my patients have to say. My mother's reflections on her hospitalization also taught me in a very immediate way that the care and solace given by physicians are just as important, if not more so, to the healing of patients as any specific therapeutic intervention that they might employ. When my mother entered the hospital, she wanted to be a patient, not a disease (in her case, 'a catatonic praecox'). Although the doctors gave her a diagnosis, it was largely as a patient that they treated her. Her physicians determined her final diagnosis not on the basis of any medical criteria but rather by negotiating what label 'would be nicest' or, in other words, the least stigmatizing and frightening to the patient. Indeed, despite her anxiety over what the hospitalization might portend for her future mental health, she remembered most vividly the sense of safety and consolation that the hospital provided. Treating Patients I have no simple answers as to how history has informed my practice of psychiatry, in part because it is impossible to disentangle questions and

Timeless Desperation and Timely Measures 267

motivations that are shaped by personal, intellectual, and clinical concerns. Obviously I am a different clinician for having studied history, but I was already a different clinician for having wanted to study history. I do believe, however, that my continued work in history has changed how I practice psychiatry. History has made me more tentative in the clinical decisions that I make, but it has also forced me to focus less on disease and more on my patients, thus helping me to be a more empathic and compassionate physician. This may be history's lesson for me but, if so, it does not mean that focusing on patients and enduring aspects of care will magically lead psychiatrists to do what is best for their patients. Knowing the historical contingency of psychiatric practice has not freed my own practice from my particular time and place, despite my desire to believe that the ways in which I care for patients are somehow outside of the context in which I practice. Just as my resident fought to tie his clinical practice to the objective and infallible march of science, I have fought to tie what I do to the more 'timeless' aspects of psychiatric care. But, whether or not we listen to history, both my resident and I must eventually practice psychiatry, and we do so in a way that reflects the world in which we practice. We may justify our therapeutic decisions differently, but in the end the therapies that we employ are likely to be the same. In my book Mental Ills and Bodily Cures, I quoted a lobotomist earnestly reassuring his patient that 'we wouldn't give you any treatment if we felt it would make you worse/ The same clinicians who gave my mother solace - and who took into account, when deciding to release her, what diagnosis would hinder her future the least - were just as capable of sterilizing, shocking, and lobotomizing their patients in the name of therapeutics. They likely regarded these treatments much as we regard those at our disposal today: imperfect, yet certainly effective; and with risks and side effects against which their benefits must be weighed. Perhaps what history most clearly tells us about contemporary psychiatric practice is that, no matter what we do, future clinicians likely will judge our therapeutics as harshly as we have judged those of the past. But history is more than an antidote for modern-day hubris, much as psychiatry is more than the therapies it employs. Knowing history has made me less certain about the 'truth' of the clinical knowledge that I possess, but it has also made me more trusting in the value of those aspects of care that have transcended drastic shifts in what counts as disease, its cause, and its remedy.

268 Joel T. Braslow BIBLIOGRAPHY Braslow, Joel. 1997. Mental Ills and Bodily Cures: Psychiatric Treatment in the First Half of the Twentieth Century. Berkeley: University of California Press. Caldwell, Anne E. 1970. Origins of Psychopharmacology from CPZ to LSD. Springfield: Charles C. Thomas. Freeman, Walter. 1948. Transorbital leucotomy. Lancet, 2: 371-3. Gelman, Sheldon. 1999. Medicating Schizophrenia: A History. New Brunswick, NJ: Rutgers University Press. Grob, Gerald. 1991. From Asylum to Community: Mental Health Policy in Modem America. Princeton: NJ: Princeton University Press. Hale, Nathan G. 1995. The Rise and Crisis of Psychoanalysis in the United States: Freud and the Americans, 1917-1985. New York: Oxford University Press. Healy, David. 1997. The Antidepressant Era. Cambridge, MA: Harvard Univer sity Press. - 2002. The Creation of Psychopharmacology. Cambridge, MA: Harvard University Press. Horwitz, Allan V. 2002. Creating Mental Illness. Chicago: University of Chicago Press. Kirk, Stuart, and Herb Kutchins. 1992. The Selling ofDSM: The Rhetoric of Science in Psychiatry. New York: A. de Gruyter. Pressman, Jack David. 1998. Last Resort: Psychosurgery and the Limits of Medicine. Cambridge: Cambridge University Press. Swazey, Judith. 1974. Chlorpromazine in Psychiatry. Cambridge: MIT Press. Valenstein, Elliot. 1986. Great and Desperate Cures: The Rise and Decline of Psychosurgery and Other Radical Treatments for Mental Illness. New York: Basic Books.

A Brief History of Timelessness in Medicine CHRISTOPHER CRENNER

The power of time and history to shape medical encounters is widely acknowledged. Here I want to consider the opposite, the power of timelessness. By timelessness I mean to suggest more than simply the quality of being unrushed or unharried in the work of doctoring. Contrary to my assumptions as a historian, I have sometimes felt immersed in medical practices that seem essentially human and freed for the moment of their particular, local constraints and expectations - freed, that is, of historicity and more a part of medicine in a longue duree. To act in this capacity as a physician is to offer a service that may be impossible to realize otherwise. At the heart of medicine is the delivery of expert assistance to a person in need. But at the brink of timelessness lies an understanding that attention to this person can be at least as important as expert assistance. Illness creates the most fundamental kinds of human need. A physician who delivers care as a humane, unconstrained service, as an end in itself, can bring true relief, even when the patient cannot be cured or saved. Yet the ability to deliver such care requires focus, intent, and an unfettered investment of time that amounts to a kind of letting go of time - or what I am calling timelessness. A short essay on the timelessness of medical encounters faces an obvious challenge of scale. How to be succinct about eternity? My way of addressing the challenge will be to indicate and contain the topic within an account of a single episode in my medical career, and to use that episode to raise a related question that I have about the history of doctoring. Given the inevitability of history that the meetings of doctors and patients are always framed by time-bound and contingent social and cultural conditions, what features of these conditions might

270 Christopher Crenner

make possible the timelessness that I am about to describe? Timelessness I found to be a rare condition, precious but strangely easy to fritter away. The Patient When I first saw {Catherine Scott, in the fall of 1999, she sat before me propped up on a stretcher, creating a vague but disquieting presence in the hallway of our hospital clinic. Seeming at once both peaceful and seriously ill, she lay still, almost relaxed except for an occasional twitch; her eyes opened occasionally but her gaze was unfocused and aimless. Dressed in black sweat pants and a loose, colorless shirt, she came accompanied by her daughter directly from her home, I was told. Yet she brought with her all the trappings, sounds, and commotion of major, hospital-level life support. Hanging from the side of her wheeled gurney was a bag of urine with a tube that disappeared under the institutional sheets that covered her legs. An oxygen tank sat next to her bed with an attached humidifier that fed gas to a clear plastic mask positioned over her neck. Here was the most notable thing: projecting from the center of her neck she had a permanent tracheostomy a short plastic tube aiming a stream of moist air directly down into her lungs. Machines clicked and whirred about her as she lay gurgling and sputtering softly with each breath through her tube. The medical report that came with her was equally striking. Katherine Scott was in a persistent vegetative state - a kind of light, permanent coma. The clinic staff added the corollary that her daughter, Patricia, was keeping her alive on machines. Katherine Scott's breathing, her heart, and her digestion worked reasonably well; but without constant care, machinery, and support, she would rapidly flag and die. She had no conscious thoughts or awareness, as far as anyone could discern, and so she had no protection against pain, hunger, or thirst. I learned that this disastrous change was recent for her. Just four months earlier, she had been going about her day at home when she was overcome with a severe attack of asthma. She became unable to breathe. Her family called an ambulance, but by the time it arrived, she was unconscious. Emergency efforts succeeded in preventing her death, but at a tremendous cost to this vulnerable woman in her sixties. The fragile outer layer of brain cells that supported consciousness had been destroyed by lack of oxygen; her capacity for thought was lost. In essence, nothing remained of her mind but a set of basic reflex functions. Katherine Scott murmured and sputtered but did not speak. She opened

A Brief History of Timelessness in Medicine 271

her eyes, but did not comprehend her world. Electroencephalographic recordings of brain waves in the hospital documented this sad predicament. She was alive; but in this state, all that preserved her life were the machines - and her daughter. My examination of Katherine Scott in the clinic that day, and my brief discussion with Patricia, lent validity but also greater complexity to this medical account. Machines were certainly important to her survival. In addition to the urinary catheter and the tracheostomy tube, I found a thin, flexible hose entering her stomach through her belly. During the day Patricia attached the hose to a bag of liquid nutrients that were her mother's only sustenance. Katherine Scott could not take her food by mouth, since without conscious direction, it tended to go the wrong way into her lungs. Her tracheostomy tube was not crucial for her survival. She could breathe reflexively on her own, but she still had recurring attacks of severe asthma. Ironically the asthma no longer threatened her life, because the tracheostomy made it easy for her family to give medications and oxygen to help her ride out these attacks safely. Patricia Scott, standing beside the gurney that day, made a powerful contrast to her mother. She was young and vital, a tall woman who hovered confidently over the medical machinery that she tended. My talk with her gave me a first familiarity with her mother's story and circumstances, though I would soon learn more. Over the next few months, I saw the pair several times in the clinic and in the hospital before and after episodes of severe illness. Katherine Scott needed more than machines to keep going. She also relied on constant care and attention. Patricia provided most of that. Because her mother could lie in the same position for days, her skin would break down and become infected. Patricia and her children turned her and dried and cleaned her when she was at home; but still she developed skin sores from the unrelieved weight of her motionless body. Her urinary catheter predisposed her to bladder infections. Thick secretions and mucus from her airways built up and required regular suctioning through the tracheostomy to avoid pneumonias and exacerbations of asthma. With all these difficulties, and the repeated hospitalizations through the early months of 2000, an increasingly agitated relationship developed between Patricia Scott and her mother's various physicians. Under my practice-arrangements, the attending physicians and staff of the hospital took over the hospital care of my patients during their stay. The physicians who assumed Katherine Scott's care in the hospital found that Patricia had definite ideas about her mother's treatment, which

272 Christopher Crenner

often differed from theirs. Disagreements were rife. One doctor put it simply: Patricia insisted that 'everything be done for her mother/ while he doubted whether anything much could or perhaps should be done. Although I was not at the center of these disputes, I was deeply implicated. In addition, I was disturbed by the stark contrast between a poor, African-American family in need of medical service and the group of wealthy, mostly white experts - myself included - who were authorized to provide it. Further considerations seemed to be called for. During the next hospitalization, I decided to avail myself of a quirky and underused hospital team: the ethics consult service. Having been schooled at least nominally in the medical ethics of the 1980s and 1990s, I thought I knew what to expect. Ethics, I guessed, might help to map out a simple set of interests at stake here. Katherine Scott was entitled to decide about her medical care, but in her present condition, that right had fallen to her daughter as her proxy. Patricia should be able to articulate her mother's interests in proper medical care, as she understood them. Doctors and nurses, on the other side, worried that Patricia's choices might not be what was right for her mother, or more significantly what her mother would want for herself. Patricia insisted, for example, that her mother should receive all lifesustaining measures available, including emergency cardiopulmonary resuscitation and an artificial respirator, if the need arose. Was such use of further invasive medical procedures and machines appropriate? Would Katherine Scott truly want her life sustained by all possible measures, given the inevitable toll on her dignity, autonomy, privacy, and bodily integrity? She was by some accounts in a pitiful state and getting gradually worse. Where, indeed, was the 'Katherine Scott' that we looked to as the person whose interests we served? Without any detectable thought or awareness, where, and who, was my patient? In addition, a social worker had cautioned me that at least one concerned family member was expressing unease about Patricia's choices. This younger sister of Patricia reported that her mother, Katherine, had stated in earlier discussions that she did not want to live a life dependent on medical machines. Yet her elder daughter was now subjecting her to just such a life. The Patient's Daughter Here the interpretation of interests got even more disturbing. Katherine Scott and her family were poor and lived on the other side of town,

A Brief History of Timelessness in Medicine 273

from the perspective of our medical center. A disturbing aura of injustice and racial discrimination clung to her story. Her asthma attacks raised this concern from the start. Poverty imposes special risks on people with asthma, leading to a more severe expression of the disease. Inability to buy medications and lack of access to medical care are among the mechanisms presumed to worsen the disease for the poor (Gottlieb, Beiser, and O'Connor, 1995; Lang and Polansky, 1994). I also remembered the publicity surrounding the claim that ambulance arrivals were delayed to homes in certain parts of our city. Had Katherine Scott been a victim of disenfranchisement and prejudice as much as of disease? A severe and poorly treated attack of asthma might have combined with an untimely wait to rob her of health. Such a possibility raised in me resentment against the biases built into our health system. I imagined how much more resentful and angry - or possibly despairing - her family felt. An indirect reference from one of the nurses also brought me up short. She suggested a stark and ugly interpretation of the situation. Patricia was unemployed and was receiving a regular, small social security payment for her mother's disability. I got the hint that we should suspect Patricia of keeping her mother alive to maintain a job for herself, at the expense of a government program. Would this charge ever have been lodged so nonchalantly without a legacy of prejudice to back it up? I felt that only a chasm of racial alienation could make it possible to cast the stalwart daughter in the role of a profiteer at her mother's hideous misfortune. More importantly, I sensed that we were accruing a debt of obligation to Katherine Scott and her family to balance the insidious suspicions and injustices. There was nothing simple or reassuring about the situation; perhaps ethics would help me to distill out a few decisive points. An ethics consult service, when it is good, will at least help people to talk through difficult issues. In this case, they were helpful in certain surprising ways. The ethics service responded by convening a meeting in a comfortable conference room at the hospital. Two ethicists, acting as moderators, brought together Patricia, one of the staff physicians, and me. In retrospect, I confess that my agenda might have been more favorable to Patricia Scott in her situation. I was concerned most by the sister's report about her mother's stated wishes. During her hospitalizations, Katherine Scott had already been subjected to a lot of medical poking and prodding, and some minor surgery. In addition, if we 'did everything for her/ she faced a future of more invasive medical ma-

274 Christopher Crenner

nipulations and even more devastating dependence on machines. I had been offered evidence that she would not have wanted it that way, whatever Patricia's feelings on the matter. I was eager to hear more fully the daughter's views. Patricia Scott did not seem intimidated by the meeting, despite what appeared to be formidable odds against her. She sat in a conference room peopled with representatives of a hospital system that often disagreed with her. In addition, the event looked to my eyes like a room full of white folk on one side, and a single black woman on the other an imbalance that we had neither intended nor intended to avoid. In spite of it all, she seemed confident and eager to talk. After introductions and a preamble by one of the ethics moderators, I gently tested my question about her mother's wishes, with an unexpected result. Patricia agreed. Her mother had not originally wished to be kept alive on machines. She and her family had discussed the possibility briefly before, prompted by previous hospitalizations with severe bouts of asthma. Since her recent tragedy, however, Katherine Scott had communicated a new wish to her daughter. The doctors did not know her mother well, Patricia declared. She and her mother were very close, and through this powerful connection she was able to read her mother's wishes, even now, when she was disabled by sickness. Her mother had let her know clearly that she was doing the right thing. Katherine Scott now wanted to keep going on the machines and to get everything that medicine had to offer, no matter how unpleasant it might seem. Patricia stated that she was certain of this fact, and that she was the best representative for her mother's wishes. Seeking to understand her position better, I asked a couple additional questions; the ethicists summarized; and we were done. The meeting ended on an amicable tone, but without obvious resolution. I began gradually, however, to take note of the wisdom of Patricia's views. I was skeptical about her claim of an almost supernatural communication with her unconscious mother, but Patricia was the one at the bedside providing care. The more I thought about that, the more I came to feel that if Katherine Scott could have seen the determined and dedicated look on her daughter's face, she might very well have wanted to do what Patricia was recommending. Any mother would have respected such a child's obvious love and concern. What did it matter if she had to stay on machines for a while longer? My working assumption, after all, was that Katherine Scott was not aware and felt nothing -

A Brief History of Timelessness in Medicine 275 as my bioethics colleague reminded me. As a physician, I had the obligation to look after the interests of my patient. But did her most pressing interests now reside in her devoted daughter, hovering over her bedside? Who was suffering here, really? Physicians in Time and Out These interactions were firmly rooted in the moment. As a historian, I understood that clearly. Our discussions were shaped by the styles, assumptions, and exigencies of the day. If Patricia Scott and I had sat facing each other fifty or a hundred years earlier, our unusual conversation could not have occurred. New technologies were part of the change, of course, since they permitted her mother to be kept alive. A century of change in the relationship between Americans of different races also figured in the picture. Yet conditions more directly relevant to the relationship between patients and physicians had changed too (Katz, 1984; Rothman, 1991; Shorter, 1985; Stoeckle, 1987). Newly revised protocols for medical decision-making encouraged Patricia and me to phrase our discussion in our particular way. We spoke only in terms of what her mother would want. We both avoided any assertion that we knew what was right or best, in some absolute sense. We debated what we thought Katherine Scott would have wanted for herself. These ideals for medical decision-making were distinctly different from a century, or even a half-century, earlier. In the year 2000, my patient's personal choices about her care were the priority, even when she could not express them directly. If it had been 1950, in contrast, I, as the physician, might have assumed sole responsibility to determine the course of action, since medical judgment was accepted as the best - and perhaps only - appropriate guide to medical care. I might have described my plans briefly and looked for the assent of a family member, but would never have sought to discover 'what she really wanted for herself.' This model of unilateral decision-making had weakened in the late twentieth century, with a widening sense of the patient's autonomous interests in guiding care. These changes also reflected a flattening of the unchallenged control that physicians had exercised over their work through the middle of the twentieth century. Interestingly enough, however, physicians in an even earlier time had not maintained such hegemony over patients. A full century ago, in 1900, physicians did not yet hold sway over decision-making to the extent that they would by 1950. My study of a

276 Christopher Crenner

dense sample of early twentieth-century correspondence between physicians and patients suggested that many medical decisions were based on the family's wishes (forthcoming, 2005). Physicians warranted special respect for their skill in managing sickness, but still they constituted a loosely organized group with only the rudiments of the persuasive authority that they would later wield. Nor, however, were patients assumed to be primarily in control. Decision-making and the approval of medical plans rested often with family members and caretakers. A capable, socially empowered individual often took charge of his, or less typically her, medical care for a time. The family, however, tended to act to relieve its sick and suffering members of the additional burden of responsibility for these decisions. Over the ensuing century, the nature of consent to medical services and the patient's obligations to understand and endorse medical care had changed radically (Abel, 2000). Medical ethicists had become important participants in these changes; so it was perhaps appropriate that they should try to help us out (Fox, 1990). Our ethics consultation, if anything, served to illuminate even more sharply the existing conflicts. I found, though, that it also changed something subtle about my approach. I hate to think that I may have held back earlier in my care for my patient; following the meeting, however, I believe that I became more attentive to her. Katherine Scott got sick again and required hospitalization, but only after a longer period of stable health. I cannot say whether I responded faster to early signs of infection in my clinic, or whether Patricia became a more inspired caretaker at home with her confidence aided by the support of a physician. In any case, Katherine Scott managed to avoid the hospital for several months. When she was admitted next with pneumonia in the late spring of 2000, relationships were changed. Patricia continued to claim that everything possible be done for her mother; now, however, she seemed not to approach the physicians confrontationally. My sense was that Patricia had become less concerned about medical interventions and more interested in personal attention to her mother. Mercifully, all that was necessary was a few days of antibiotics for the pneumonia, and they were back at home. Following this hospitalization, the course changed even more dramatically. In reviewing the hospital chart, I happened to note the date of Katherine Scott's nearly fatal asthma attack and found that the anniversary was approaching. On that day, I called Patricia at home to ask how her mother was doing, in her view, now a full year after the tragedy. We

A Brief History of Timelessness in Medicine 277

talked about her condition. We reviewed things that we could watch for that signaled more troubles ahead. I endorsed her role as the spokesperson for her mother's interests. I suggested to Patricia that I come to visit her mother at home, to save them a difficult trip into the clinic. The world was changing for them both. But for me, it would hold out a moment of timelessness. On a grayish Saturday morning, I pulled up the gravel drive of Katherine Scott's small, single-story house, at the end of a block of similar houses and mobile homes. A thorny-looking television aerial stuck out at an awkward angle from the chimney. I walked up three concrete steps and was let into the main room of the house. In the dim light, I saw a young boy or girl asleep on a sofa. A pile of blankets and a pillow along the other wall showed where someone else had spent the night. Empty bags of hamburgers and french-fries lay about on a plastic coffee table, evidence of Patricia's two children and their late Friday night in front of the television. The corner of the room opposite me opened directly into a tiny galley kitchen. In the other corner lay Katherine Scott in her hospital bed, surrounded by some familiar tubing, drips, and devices. She looked diminished, more worn and drawn inward than when I last saw her in the clinic. Patricia came out from the one adjoining room, the only bedroom. She indicated that there was some work to be done first, so I lent a hand. We suctioned out the tracheostomy tube to provide a period of clear breathing. We shut off the line with the feeding solution and unhooked it from the tube that protruded from {Catherine's belly. I got her arm and shoulder and hip and rolled her up onto one side. Patricia worked gently with soap and clean cloths to wipe and dry her. A little powder went on and a clean gown. We rolled her out of the sheets and changed the hospital bed. Each one of our small, careful acts took its own time, and seemed to contain within it all the intentions and memories of the many similar acts that had preceded and would follow it, so that all the time that they took together was both endless and already passed. It was a moment of timelessness. For Patricia, this was just another day. But for me it was a remarkable gift. Two people taking care of an aged woman, near the end of her life, in her home, cleaning her body, turning her, and wrapping her in clean linen, murmuring to her softly to soothe any upset. We could have been anywhere; we could have been in any time. It happened in a home, among her loved ones, far removed from the ethics committee, clinic schedule, and the physician's utilization review board. I remember this

278 Christopher Crenner

moment as lasting for years in a timeless world where people lived their lives, raised their children, and died, over and over, with doctors there to witness. I felt deeply connected to this lasting cycle of assisting and understanding, and gratefully sheltered from the complex vectors of influence in my usual medical life. As we worked, Patricia told me how she remembered as a child her mother frying fish for the neighborhood. They had a pit dug in the backyard where they would make a fire on the summer weekends. They got catfish, a lot of them, drenched them in spicy cornmeal, and cooked them in oil. The smell went all around the block, so people knew that she was at it again. She charged a dollar a plate; and the whole street would come for lunch in her backyard. She was a good woman, Patricia said. We finished up, smoothing the sheets flat. Time again took up its customary pace, but things seemed different. Our tasks had taken on a weightier but less urgent feel than they ever had in the clinic. Perhaps Patricia's mother had simply started to die. We seemed to be mourning her, in our own separate ways. This timelessness had nothing aimless about it; nor was it empty of duty. To me, it seemed possible only by acknowledging first the sturdy, temporal specificity of this family's life: so that timelessness could be reached only by first embracing the historical reality of the moment. Without thinking about poverty, about prejudice, about health care funding and public insurance, there was no escape from these constraints - since you cannot slip the bonds that you do not feel. As it was, this timely escape into timelessness became a critical moment in my role as Katherine Scott's doctor. Patricia and I began to talk more readily. We made plans that seemed right to us both. Her mother became sicker; not in spite of all that we could do, but rather in a sadly anticipated way. To me, at least, it seemed that the family was finding a way to face, if not to accept, the inevitable tragedy. Within four months, she died quietly at home with Patricia and her family around her. Over those last weeks, Patricia and I talked often, collaborators in aiding her mother through her final days with some grace. The excellent hospice nurse who provided palliative care paged me at 3:00 a.m. the night Katherine Scott died. I spoke with Patricia for a short time, reflecting on her mother's life. Usually I have difficulty getting back to bed after waking for a medical problem in the small hours before the day. But that night I slipped easily into sleep. When I talked to Patricia again, she had begun making plans of her own.

A Brief History of Timelessness in Medicine 279

36 Timelessness #4. Artwork by Matthew Scanlon.

Timelessness in History Medicine is rapidly moving out of an era that was congenial to the quality of timelessness in a physician's work. While this particular loss may not be the most critical one facing medicine in the twenty-first century, it is emblematic of a larger set of losses that physicians, patients, and caretakers are already experiencing today. Historians have laid out the evidence for such subtractions. Ken Ludmerer argued in a recent book that the values of humane service and free inquiry are being squeezed out of American medicine by mounting (and partly self-imposed) financial and corporate pressures on training, research, and education (Ludmerer, 1999; Rodwin, 1992; Starr, 1982). Circumstances make it increasingly difficult for doctors to be exacting technicians and corporate bureaucrats, and still to act simply as healers. It is as healers that doctors can aspire to do the unconstrained, humane medical work that I connect with the experience of seeming timeless-

280 Christopher Crenner ness; and it is this that is being lost. While to my historian's eye the problem is not entirely new, it surely is a graver problem now than ever in the past. What are the particular time-bound conditions of our day that operate to thwart timelessness in medical practice? The usual culprits may not be the true source of the current dilemma. A century of growing technical prowess has indeed distracted physicians from the personal side of medical care. Yet technical skills also delivered to doctors a secure and widely endorsed responsibility for healing that is no longer dependent on the calculated cultivation of social influence, as was required of the successful physician a century ago. The move of technically complex medicine out of the home into the hospital also distanced physicians from the human rhythms of domestic care, from the cycles of birth, illness, and death that organized their work in previous generations. Yet the hospital has also offered a different sort of timelessness, in its perpetually lit operating rooms and intensive care units, staffed through the odd hours by sleepless, if not always vigilant, physicians. Medical science manifests its own timeless qualities, too, in its quest for enduring truths about the human body. Technical medical practice has steered my colleagues and me away from our patients' homes and lives, but also delivered to physicians the tools and strategies of a powerfully universal, and so widely accommodating, kind of healing (Brown, 1995; Giddens, 1990; Haskell, 1984). The true culprit - more than modern institutions or technology - may be the pressure of a fully rationalized medical economy. A large-scale, market-driven reorganization of medical services has overtaken the doctor's work. In losing their shelter from this larger market, physicians have also weakened their capacity to capture a kind of timelessness. In the United States, an older, disjointed cottage industry under the proprietorship of individual physicians has largely disappeared. Corporations and institutions speaking for their boards and shareholders call physicians to account. Even in the more socially responsible national systems outside the United States, physicians find themselves needing to account to citizens in greater detail for their management of crucial medical resources. Perhaps medicine has simply become too highly valued to escape diligent, bureaucratic oversight. In a wholly rational, bureaucratic system of medical care, however, the physician's time becomes fungible and consumable. In the few years since my experience as Katherine Scott's doctor, the academic medical center where I work has instituted stringent new methods for time-accounting

A Brief History of Timelessness in Medicine 281

and insurance-claims adjudication. This system requires me at each step to define my activities as discrete, billable services, and it penalizes vague, time-consuming forays into my patients' lives. Timelessness in this setting appears wasteful. Its value to the physician or the patient cannot be redeemed or replaced by something of equal worth. An era that held out the possibility of timelessness in medicine may be passing rapidly into history. BIBLIOGRAPHY Abel, Emily K. 2000. Hearts of Wisdom: American Women Caring for Kin, 18501940. Cambridge, MA: Harvard University Press. Brown, JoAnne. 1995. Profession. In Richard Wightman Fox and James T. Kloppenberg (eds.), A Companion to American Thought. Cambridge: Blackwell, 543-6. Crenner, Christopher. 2005, forthcoming. Private Practice in the Early TwentiethCentury Medical Office of Dr. Richard Cabot. Baltimore: Johns Hopkins University Press. Fox, Renee C. 1990. The evolution of American bioethics: a sociological perspective. In George Weisz (ed.), Social Science Perspective on Medical Ethics. Philadelphia: University of Pennsylvania Press, 201-17. Giddens, Anthony. 1990. The Consequences of Modernity. Stanford: Stanford University Press. Gottlieb, D.J., A.S. Beiser, and G.T. O'Connor. 1995. Poverty, race, and medication use are correlates of asthma hospitalization rates. A small area analysis in Boston. Chest, 108: 28-35. Haskell, Thomas L. 1984. Professionalism versus capitalism: R.H. Tawney, Emile Durkheim, and C.S. Peirce on the disinterestedness of professional communities. In Thomas L. Haskell (ed.), The Authority of Experts: Studies in History and Theory. Bloomington, IN: Indiana University Press. Katz, Jay. 1984. The Silent World of Doctor and Patient. New York: Free Press. Lang, D.M., and M. Polansky. 1994. Patterns of asthma mortality in Philadelphia from 1969 to 1991. New England Journal of Medicine, 331: 1542-6. Ludmerer, Kenneth M. 1999. Time to Heal: American Medical Education from the Turn of the Century to the Era of Managed Care. New York: Oxford University Press. Rodwin, Marc A. 1992. The organized American medical profession's response to financial conflicts of interest: 1890-1992. Milbank Quarterly, 70: 703-41. Rothman, David J. 1991. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making. New York: Basic Books.

282 Christopher Crenner Shorter, Edward. 1985. Bedside Manners: The Troubled History of Doctors and Patients. New York: Simon and Schuster. Starr, Paul. 1982. The Social Transformation of American Medicine. New York: Basic Books. Stoeckle, John D. 1987. Introduction. In John D. Stoeckle (ed.), Encounters between Patients and Doctors. Cambridge: MIT Press, 1-129.

How Medical History Helped Me (Almost)

Love a V.A. Hospital STEVEN J. PEITZMAN

In this essay, I shall try to show how working as a house officer, then junior attending physician, on the Medical College of Pennsylvania service at the Veterans Administration Hospital in Philadelphia (hereafter 'the V.A/) in the 1970s helped nurture my then budding infatuation with medical history, and how an appreciation of history helped me accommodate to the vagaries of the VA. Unflattering observations about the VA. will necessarily appear, so I need to declare early on that some of my most gratifying and meaningful medical work occurred there. By 'meaningful/ I simply refer to efforts that helped patients either to recover or to avoid getting worse. My responsibilities in the hospital's dialysis unit and model hypertension clinic proved particularly rewarding, especially through collaboration with first-rate medical colleagues and nurses. Indeed, with a little poking about, numerous able and dedicated nurses, clerks, technicians, and other employees could be found throughout the hospital, and one came to learn who and what could be depended upon to get something done. For the most part, the hospital and its staff treated patients with diligence and respect. I enjoyed some longstanding friendships with patients; and I recognized that for some of the men, such as several paraplegic patients on maintenance hemodialysis, whatever courage they may have exhibited on battlefields could hardly have exceeded that shown daily in their lives of sickness. I even carried out and published some minor but amusing clinical research. On the other hand, the V.A. could be a burdensome and dispiriting place to work. Bureaucratic hindrances flourished, not all employees exuded energy, and occasional patients bested the elasticity of one's altruism. For long stretches, the place seemed 'devoid of heat, staffed

284 Steven J. Peitzman

by madmen, and sunk in apathy/ to borrow the words of the late cultural analyst Sidney Joseph Perelman (Perelman, 1977, 27). (Actually, I don't recall that heat was ever much of a problem at the hospital, but I wanted to use all of Perelman's phrase, which he applied to a certain range of Scottish hotels.) I here digress to acknowledge that the editor of this volume hoped to gather essays that would show how several physician-historians palpably applied their historical knowledge in their clinical work, particularly in making a diagnosis. And not just any diagnosis, one presumes, but a magnificent diagnosis - of the sort whose pronouncement would strike medical students exophthalmic with amazement, and the patient mute with terror. I cannot claim to have made any such historically driven diagnosis, but if I had, it surely would derive from my early work on 'Richard Bright and mercury as the cause and cure of nephritis,' one of my earliest historical publications (Peitzman, 1978). It would have happened something like this: The Case of the Man with a Spittoon (in homage to R. Austin Freeman, and to Bob and Ray) Setting: It is late morning during my nephrology outpatient hours, sometime in the 1980s. An approximately sixty-five-year-old man, with swollen legs, and looking overall not entirely robust, enters the examination room. He is holding - then sets down on the floor - a good-sized brass spittoon, which I assess to probably be a cheap reproduction made in China and advertised in the back of Historic Preservation magazine. Man with Spittoon: Well, here's the story, Doc. About two or three months ago, I began to notice that my pee was generating a huge amount of foam. It was embarrassing in public men's rooms, suds all over the place, and beyond that, it seemed odd. Then my shoe size doubled. I went to my regular doctor, who used some little stick to find out that there's protein in my urine, whatever that may mean, and he referred me to you. SJP (using the desirable 'open-ended' interviewing technique): I see. Can you tell me more ... anything else you've noticed over this time? Man with Spittoon: Yes, as a matter of fact, I can. I've been suffering with a huge amount of salivation all the time, a horrible nuisance. Sometimes, a tooth or two shoots out. I've taken to toting this spittoon

How Medical History Helped Me (Almost) Love a V.A. Hospital 285 around with me almost wherever I go (pauses to expectorate: fwwtt... ping ... ping). SJP (offering an 'empathetic statement'): That must be very unpleasant for you ... it's heavy, and yet obviously an imitation. Now then, over the last few months, by chance have you been taking any sort of pills or powders, particularly something that's been foisted on you? Man with Spittoon: Come to think of it, yes. Maybe four months back, my wife - who's a lot younger than I am - said I seemed a bit peaked, that I was even beginning to look distinctly geriatric. She was worried I wouldn't pass the physical for the additional million dollars of term life insurance that she asked me to take out - to add to the million I already have for which she's the sole beneficiary. So she gave me some sort of pills to take, says they are a kind of 'tonic.' SJP: And your wife - whom I think I saw in the waiting room - didn't I once spot her working as a volunteer decent at the preserved Victorian pharmacy down in the historic district? I'm one of its historical advisers. Man with Spittoon: Yes, yes, she spends a lot of time there ... gets along well with that handsome young director they recently hired. But what does that have to - ? SJP (interrupting patient): The pill you have been taking, Sir, undoubtedly contains mercury - probably it's calomel, once quite a popular remedy. Mercury causes nasty mischief with the kidneys and salivary glands. Your wife has been trying to poison you; you're very fortunate that you happened to have come to me. Not another nephrologist in ten thousand (if we are ten thousand) could have made this diagnosis and saved you. But I wrote a paper once on ... well, never mind that: we'd better call the police and check your creatinine. To return to my major theme - and the Philadelphia V.A. Hospital -1 will describe what to me at the time were some of its most striking attributes and oddities, selected, as will become evident, for the eventual purpose of this essay. Readers who have toiled in other V.A. hospitals will recognize some of the features that I shall recount. The hospital, built in the 1950s, sat - and still sits - on the edge of the University of Pennsylvania campus in west Philadelphia, immediately adjacent to historic Woodlands Cemetery, which provides some verdant, if not wholly reassuring, vistas from the windows of many of its rooms and wards (figure 37). Although there existed single and fourbedded rooms, through my years in the 1970s and into the 1980s, the

286 Steven J. Peitzman

37 The old V.A. hospital, Philadelphia, west elevation from the conveniently located Woodlands Cemetery, which offered patients verdant, if not wholly reassuring, vistas. Archives and Special Collections on Women in Medicine, Drexel University College of Medicine, Philadelphia.

How Medical History Helped Me (Almost) Love a V.A. Hospital 287

sixteen-bed open wards remained in use. Several actually held seventeen beds: the house almost always overflowed with patients, so the administration had eased an extra bed between numbers 8 and 9, designating it bed 8l/2. We house-staff wags called it the Fellini bed. The hospital ran chronically at or above capacity for several reasons (in addition to the fluid admissions system, which I'll discuss later). Lengths of stay could be astonishing - three or four months hardly warranted comment. Some veterans suffered from florid and complex illnesses, and even exacerbations of a chronic ailment often required a prolonged stretch of convalescence. As patients became better, they moved from the single-bed rooms, which offered oxygen and suction, to the open wards. House staff with any flicker of conscience felt reluctant to discharge a patient prematurely, for unless the veteran were 'service connected/ outpatient follow-up could not be ensured. Actually the illness or injury, not the veteran, might be 'service connected/ This meant that the injury was acquired, or a disease diagnosed, during active military service. Gradations existed: a bad knee might be '50 percent service connected/ hemiparesis from a head wound 100 percent. Having a service-connected injury or illness entitled a veteran to a pension and expanded medical services, but anyone honorably discharged was eligible for hospitalization if so judged by the 'Admitting Officer of the Day/ Sometimes a patient lingered, merely awaiting approval or implementation of some test. I remember one young man, discharged rather recently from active military service and with nothing yet in mind for his future, who cheerfully stayed with us for several months while waiting for the V.A. to approve skin testing for his pronounced allergic symptoms. A minor anomaly that extended hospital stays centered on dentistry. The hospital had a capable and willing dental service which carried out an examination on virtually every patient admitted. Of course, many of the down-and-out men for whom the Philadelphia V.A. was their only reliable source of care and, sometimes, respect, displayed woeful decay and loss of teeth. Though the dentists patched and filled where feasible, extractions necessarily abounded. Through an irksome regulation (later amended), dentures could be fabricated for any veteran, but the appliances could be dispensed only to inpatients - never to outpatients unless they were 'service connected/ Interns and residents would keep a patient who was otherwise fit for discharge for a few days or a week if he was awaiting plates. Naturally, there existed a limit to this sort of

288 Steven J. Peitzman

grace period, even at a V.A. hospital. When the turnaround time for dentures happened to bog down, the falsely parsimonious regulation would generate, absurdly, a closet full of teeth unmatched to veterans, and a growing population of Delaware Valley veterans without teeth. Finally, many hospitalizations went on for months simply because a patient had nowhere else to go, or was awaiting a place at one of the V.A. nursing homes or residences. Sadly, this status, as is well known, applied most frequently to the elderly, a phenomenon by no means limited to the 1970s, or the V.A. system. Because hospitalizations were lengthy and many patients were not seriously ill, the open wards encouraged social interaction and even camaraderie. Well patients often assisted staff in delivering meal trays, or pushed less fortunate inmates in wheelchairs to the lounge, to the hospital 'canteen/ or even to various treatments and tests. (Nursing staff rarely or never requested such aid, and some discouraged it.) Do I remember correctly that occasionally movies were set up and shown in the big wards, until the ubiquitous televisions were mounted in their four corners? On federal holidays, such as Veterans' Day, when, not surprisingly, only a reduced staff came in to care for the veterans, a contingent of 'Daughters of the American Revolution' would visit the wards and smaller rooms, offering encouragement, toothpaste, cookies, and sometimes a vocal performance. I think I remember in this context a sort of piano with bench, fitted up on a small, rolling platform, which could be rolled from one ward to another. It reminded me of a similar contrivance once used by the entertainer Ed Wynn (whose career spanned from vaudeville to television), whose wheeled piano, unlike the V.A. version, could be charmingly pedaled about by its occupant as he sang and played tunes. Beyond its social possibilities, the open ward configuration held some real advantages. For example, a sudden change in a patient's condition might be observed by a nurse, aide, or a ward mate sooner than it would have been detected had the patient reclined alone in a single room. On the other hand, ambient chatter hindered auscultation, privacy suffered, and the occasional implementation of cardiac resuscitation, a 'code,' in an open ward could terrify those occupying nearby beds. Certain patients waiting around for tests or perhaps receiving various forms of sustained treatment could receive a pass home for a weekend or a holiday. From time to time, one failed to come back. Other patients - some truculent, some confused, some just weary of the place - would, at a certain point, decide that, from their perspective, the

How Medical History Helped Me (Almost) Love a V.A. Hospital 289 hospital stay was complete, and simply elope. Such escapes led to all kinds of trouble and bother for nurses and interns. It was not unheard of, within a population afflicted with addictions, for a patient to return from a pass with contraband alcohol, soon discovered by astute ward personnel. I remember the poignant entreaties from one or two patients who specifically requested not being issued a pass at Christmas; they preferred the subdued hilarity of holiday time on the depopulated V.A. wards to the loneliness of a rented room, or the temptation of omnipresent ethanol. As alluded to above, the admissions system tended to keep all the beds filled all the time (except around Christmas and New Year's). Throughout the period I am here memorializing, the 'Admitting Office' was staffed during weekdays by three full-time V.A. physicians withou ties to either of the two medical schools affiliated with the hospital: the University of Pennsylvania and my affiliation, the Medical College of Pennsylvania (the former Woman's Medical College). These chaps took seriously the title 'Admitting Officer of the Day' (AOD): they admitted earnestly and unstintingly. In fairness, I must acknowledge that too often hospitalization provided the only means of dealing with a problem. The Admitting Office, which was not an 'emergency room,' allowed little in the way of ad hoc treatment. Reports for decisive lab tests or X-ray studies were delayed. Regulations limited outpatient referrals, and social service could not always find shelter for those who mainly needed a warm bed, not a workup. Beyond this, however, no conceivable incentive existed for the admitting doctors not to admit. Indeed, given the political delicacy of the status Veteran/ no greater folly could be imagined than the administration allowing a sustained show of empty beds. Once in a while, a supplicant would even appear grasping a note from a local politician containing the 1970s equivalent of 'please give this poor wretch a bed and do what you can for him.' Thus, from the first-floor Admitting Office there percolated upward to the wards a continuous flow of the frail, the demented, the homeless, the selfdestructive, the worried, the angry, occasionally the merely but utterly weird. And this unceasing stream of imperfectly sick veterans outraged the residents from the two medical schools (including at times, I confess, me), who wanted interesting patients, or at least unequivocally ill patients. We also wished for less of the custodial work that drew time away from the truly ailing, and from learning. By now, readers probably know where I am going with all this. During these years as a resident, nephrology fellow, then junior faculty

290 Steven J. Peitzman physician at the Philadelphia V.A. Hospital, my interest in the history of medicine really took hold. It had first been kindled back in my college years (at the University of Pennsylvania), when I held a part-time job as stacks page at the magnificent Library of the College of Physicians of Philadelphia. Even before thinking of medicine as a career, I became immersed - at times submerged - in medical literature, bound and unbound, current and historical. I met a devoted Fellow of the College, Fred B. Rogers, an internist-epidemiologist-historian, who edited its journal; he later became a friend and my teacher at Temple University School of Medicine. I fetched nineteenth-century journals in vast numbers for Charles E. Rosenberg, took one of his courses at Perm, and became his life-long student. Drs Rogers and Rosenberg represented contrasting exemplars of the medical historian's craft, but to me, both approaches seemed valid and significant. The historical research that I began during my V.A. years dealt mostly with my clinical specialty. But it was at this time - again, mainly the mid- to late 1970s - that professional historians of medicine were beginning to explore the social history of the American hospital. Morris Vogel's path-breaking The Invention of the Modern Hospital appeared in 1980, and Charles Rosenberg's definitive The Care of Strangers in 1987. For some years before the completion of these books, both historians had been lecturing on the history of the hospital and secreting some of their findings in articles. And once enough of their stories and insights had rubbed off on me, I realized what the zany V.A. Hospital really was, and how I could embrace it: I was taking care of patients in nothing less than a functioning (more or less) pseudo-relic of the nineteenth century, a sort of transhistorical, medical steam locomotive still groaning down a forgotten branch line. It was not an actual nineteenth-century structure, but might be likened to the re-created operating smithy, or the carriage-making shop, at places like Williamsburg, except no one inside the V.A. Hospital realized that they were in a 'living history' museum. Yes, the V.A. had electricity, which powered its lights, its ECG machines, and a peculiar visual numerical paging system overhead similar to that still sometimes encountered in once-ambitious diners. One could also find telephones, antibiotics, and perhaps a few other twentieth-century advances too trifling to list. Otherwise, however, the atavism approached perfection. A photograph of the open sixteen- (or seventeen-) bed wards, if taken in dim light, would match the engravings or woodcuts of nineteenth-century hospitals that I show as slides in my history lectures to medical students. Almost everything reported by Vogel, Rosenberg,

How Medical History Helped Me (Almost) Love a V.A. Hospital 291

and others about the social conduct of the nineteenth-century hospital I saw and experienced at the Philadelphia V.A. one hundred years later: lists of rules for patients; the desultory approach to discharging patients; weekend passes and troubling elopements; the smuggled alcohol. The recuperating veterans who, eager to be useful, helped the overworked nurses distribute meals recalled the requirement that recovered patients pay back the Victorian hospital with some sort of work, even - in Rosenberg's unforgettable example - crewing the rowboat between New York's Bellevue Hospital and Blackwell's Island in the 1860s (Rosenberg, 1992, 141). The women from the local D.A.R. branch who appeared on holidays or Sundays to offer cheer and aid to the veterans probably had no idea that they were faithfully continuing the tradition of 'lady visitors' - indeed, it was not unlikely that some of their Quaker or Episcopalian female forebears had actually done such service at one of Philadelphia's numerous charity hospitals in the nineteenth century. The occasional 'codes' in the open wards provided a hint at what the patient of the 1870s might have felt when a fellow patient underwent a surgical procedure in his own bed, or died there. The Admitting Office represented another striking continuation, or re-invention, of a historic practice. Readers familiar with the literature on the American hospital of the nineteenth century will recall that applicants for admission would present themselves to a 'receiving' room, sometimes opened only on certain days of the week. It would be staffed not by a physician, but typically by a member of the hospital's board of trustees, or a paid lay officer. All applicants for a bed did have to undergo a physical examination, but the decision to admit rested more with the hospital's managerial authority than it did with the medical officers. It helped an applicant to come with a note from an influential member of the board, or someone who could influence an influential member. At least some measure of 'moral' worthiness was required. Most Victorian charity hospitals attempted to exclude the 'incurable/ and accident victims would receive speedy acceptance, but, in general, the nature of the diagnosis did not dictate the admissions decision. The three V.A. admitting physicians whom I recall did apply medical criteria, of course, but other considerations often prevailed, mostly social and economic. A few important differences must be recognized: in our hospital, those with obviously terminal diseases were certainly not turned away, and experience with sin did not disqualify. Also, although many of our hospital's patients were indigent or close to

292 Steven J. Peitzman

it, a fair number of middle-class veterans chose to obtain their medical care there. Recognizing the V.A. as an operating historical artifact helped me tolerate it and endure its anomalies and daily frustrations. I reformulated it in my mind, obtained for it a sort of context. I was able to employ that sometimes fruitful mental technique of both being in a difficult situation and simultaneously stepping outside it, as an observer. Identifying more and more evidence of the hospital's nineteenth-century essence proved fascinating and pleasurable. In addition, I could actually begin to see myself, as a tyro physician, in a long lineage of young doctors who took care of poor and sometimes hectically sick patients in city hospitals, grappling every day with indifference and adversity. I liked the idea of being part of something deeply rooted, and enduring (figure 38). Once I moved from the status of house officer to junior attending, I had to deal with angry interns and residents who complained to me, as I had to my teachers at the V.A., of the 'dumps' being sent up to the wards by the 'A.O.D/ And my enlarging historical awareness supplied a response - irrefutable, if not fully satisfying to those house-staff members subjected to hearing it. 'The hospital as an institution was not invented for the pleasure of its doctors/ I can still hear myself saying, no doubt too pompously. 'Its functions have always been social as well as clinical. It is not, and should not be, entirely up to us to decide whom this hospital serves or how it serves. I agree that it can drive you crazy, and that there must be better ways to look after some of the old men here who are not very sick, but - here they are. This is part of society's solution for certain problems, for dealing with loose ends. Besides, you don't have to look too hard around here to find a lot of real pathology. And, if there was a sick patient in every bed, twice as many of us couldn't handle the work.' Perhaps the cardinal historical change in the American hospital was, in fact, the shift from lay to medical authority, manifested in particular by the physicians' complete acquisition of the power to rule the gates to decide what sort of patients and disorders should claim beds. This shift played out over decades during the late nineteenth and early twentieth centuries, prompted in large part by the increasing importance of surgery as a reason to enter hospital in the 1880s or 1890s. At the V.A., I actually witnessed the same change compressed into a year or so during the late 1970s. Driven by incessant complaints from house officers about medically 'inappropriate' admissions, leaders of both

How Medical History Helped Me (Almost) Love a V.A. Hospital 293

38 Steve points out subtle liver enlargement. Archives and Special Collections on Women in Medicine, Drexel University College of Medicine, Philadelphia.

294 Steven J. Peitzman affiliated medical schools pressed the hospital administration to change the admitting system. Two of the three admitting physicians were approaching retirement, so the time was ripe. The medical schools won: residents took over the admitting function under the supervision of an academic physician. At the same time, the admissions area received some much-needed improvement in auxiliary staffing and equipment. 'Social' admissions did not disappear, but they decreased in number, as medical criteria gained greater hegemony. About the same time, the V.A. administration effected a reorganization, or 'consolidation,' of the two medical school services at the hospital. My division, nephrology, came under the direction of the University of Pennsylvania, though two colleagues and I, with Medical College of Pennsylvania titles, had been carrying out the largest share of clinical work relating to kidney disease and dialysis. The university, however, wished to use its V.A. faculty appointments mainly to carry out basic research. I had never published on sodium flux across tubules or frog skin. Violating the consolidation guidelines, the heads of the Perm nephrology division contrived, in many novel ways, to make life miserable for me and one colleague. Their machinations (condoned by a spineless hospital chief of staff) destroyed the contentment I had achieved through my historically enlightened acceptance of the peculiarities of the V.A. and through the satisfaction afforded by much of the actual work. I had to pack up and get out: my own stay on the V.A. wards had reached its conclusion; my discharge papers were ready. Now, like certain veterans, I had been deemed ineligible for a place in the institution, a victim of changing criteria. The ejection proved painful, and to this day I sometimes indulge in dark and ungenerous thoughts concerning the well-being of those who effected it. But my spirit soon rebounded, as I came to realize (correctly) that my departure represented a greater loss to the Philadelphia V.A. and its patients than it did to me. Fortunately, I was able to move to the main campus of Medical College of Pennsylvania, where I continued as a nephrologist, assumed a prominent role in medical education, and (when no one was looking) further cultivated the history of medicine. Indeed, I was even able to 'historicize' my separation from the V.A.: my removal by the Perm nephrology chieftains, to make room for a toadbladder transport worker, symbolized that the ideology of science now sought to command the soon-to-be-renamed 'Veterans Affairs Medical Center.' Science would attempt to supersede the clinical imperative, which had readily overtaken charity.

How Medical History Helped Me (Almost) Love a V.A. Hospital 295

For many years afterwards, however, I returned to the V.A. every spring for a sequence of weekly afternoons teaching physical diagnosis to sophomore medical students at the bedside. It remained a fine place to carry on that noble work. Over those years, I could see that the 'V.A.M.C' was gradually undergoing modernization. At least one of the open wards, however, continued in use for a remarkably long time, and it was reassuring upon returning each March to see it so, and to always find a recuperating cirrhotic in bed 8Vi Other than that, the amiable anachronisms and the antic charm were steadily vanishing, fading back, perhaps, to finally meet their past. BIBLIOGRAPHY Peitzman, Steven J. 1978. Richard Bright and mercury as the cause and cure of nephritis. Bulletin of the History of Medicine, 52: 419-34. Perelman, S.J. 1977. Eastward Ha! New York: Simon and Schuster. Rosenberg, Charles E. 1987. The Care of Strangers: The Rise of America's Hospital System. New York: Basic Books. - 1992. The practice of medicine in New York a century ago. In his Explaining Epidemics and Other Studies in the History of Medicine. Cambridge and New York City: Cambridge University Press. Vogel, Morris. 1980. The Invention of the Modern Hospital: Boston, 1870-1930. Chicago: University of Chicago Press.

This page intentionally left blank

When Clio Falters

This page intentionally left blank

What Do You Know?

Cancer, History, and Medical Practice BARRON H. LERNER

My work as a historian and my work as a physician vividly merged one day in 1995.1 was making weekend rounds for the Division of General Medicine, seeing my colleagues' inpatients. I entered the room of a seventy-eight-year-old woman, Grace, who was recovering from pneumonia. When she opened her gown to permit me to listen to her lungs, I must have looked startled. 'I see that you can tell that I have had breast cancer/ Grace remarked. 'I had it twice, first on the left and then the right/ 'Yes/ I replied. 'And I can tell you exactly when you had it for the first time. It was between 1953 and 1955.' 'You're right/ said Grace. 'They operated on me in this hospital in 1954.' And she proceeded to tell me the story of both cancers; her second had occurred in the 1970s and necessitated the removal of her remaining breast. Before I left, Grace asked me: 'How did you know when my first operation was?' I explained to her that I was both a physician and a historian. For a book on the history of breast cancer, I was researching the very operation she had undergone in 1954 - the extended radical mastectomy. It was one thing to read about this procedure in textbooks, I told her, but quite another to meet an actual patient who had undergone the surgery. Grace was only one of many cancer patients I met while researching and writing The Breast Cancer Wars, which was published in 2001. This essay recounts several of these cases to explore my experiences in treating patients whose disease was my focus. I will ask and try to answer several questions. In what ways did my dual roles as historian and physician influence one another? Are historical and clinical knowl-

300 Barren H. Lerner

edge complementary, or are there pitfalls in transferring insights from one discipline to another? Finally, can physician-historians achieve distinctive insights? By alerting me to these questions, the encounter with Grace was very exciting. Once I had confirmed that her pneumonia was improving, my instincts as a historian quickly kicked in. I asked Grace if I could order the old volumes of her hospital chart. She said yes. As I had deduced, Grace's first operation had indeed been an extended radical mastectomy. This extremely disfiguring procedure, briefly in vogue in the mid-1950s, was designed for cancers located on the inner portion of the breast. Patients undergoing this surgery lost the affected breast, both chest wall muscles on the side of the cancer, and a portion of their ribs and sternum. Such a radical operation, doctors believed, was the only way to cure her type of breast cancer. Grace's second operation had been much less extensive, a modified radical mastectomy. There was other important information in the chart. As was routine in the 1950s, the biopsy of Grace's lump and her subsequent extended radical mastectomy had occurred during the same operative procedure. Thus, she had awoken to learn two frightening things: she had cancer, and the surgeon had removed not only her breast but part of her chest wall. As documented in the nurses' notes, Grace was in considerable pain for days. 'It's unfair to have so much suffering happen to me,' she had stated. And although she had signed a consent form, she was distressed about what had happened. 'Why didn't the head nurse tell me I was going to have my breast off,' Grace had asked, 'so I could have gotten myself prepared for the thing?' When I returned the next day, I told Grace that I had read her chart. I mentioned, gingerly, that the days after the operation seemed to have been rough. But Grace had no such recollection. She praised the doctors who had operated on her. Moreover, even though she knew that such radical operations were no longer done, she stated that it was the extensive mastectomy that had saved her life. Those radicals sure work,' Grace concluded. At this point, the historian in me wanted to tell her what was in her old chart. Not only had she not given informed consent, but all of her lymph nodes had been negative. In hindsight, she had not needed an extended radical mastectomy at all - not even a radical mastectomy. Removing the breast alone would have saved her life. But I decided to play doctor. I simply nodded my approval and again

Cancer, History, and Medical Practice 301 thanked her for sharing her story. She even let me take pictures of her chest, where the missing ribs had left her heart completely exposed except for a thin layer of skin. One badly placed kick or shove in the previous forty years could have ended Grace's life. Grace's case underscored how our histories of the extended radical mastectomy differed. To me, the procedure was a well-meaning, but ultimately misguided, attempt by overly aggressive, postwar surgeons to cure cancer 'at all costs.' To Grace, it was the operation that had saved her life. The concurrent existence of these two 'histories/ it seemed to me, was instructive. The same event was subject to different historical interpretations, depending on who was the observer. If the historical record was not definitive, neither were my actions as Grace's doctor. My decision not to tell her what I had learned might be criticized as too paternalistic. She might have acknowledged that, in retrospect, a less extensive operation would have worked just as well. But given that my information was not medically relevant and would have flown in the face of her well-established story, I kept quiet. It was a decision, but not necessarily the 'right' one. If I chose not to disclose information about a cancer that had been treated in the 1950s, how would I address this issue with a current patient? I confronted this question in the case of Jacqueline, a fiftyeight-year-old woman diagnosed with lung cancer in 1999. History provided some fairly convincing lessons about the value of disclosure. During the years after the Second World War, it was commonplace for physicians to withhold the diagnosis of cancer from patients. Although Grace seemed to have known her diagnosis in 1954, other patients were kept completely in the dark. Doctors used words like 'inflammation,' 'tumor,' and 'growth' to deceive patients. Embodying the paternalism of the era, they rationalized their behavior by arguing that the truth would remove all hope, leading to earlier deaths, depression, and even suicide. Family members readily participated in this obfuscation. A 1961 article in the Journal of the American Medical Association (JAMA) documented this lack of truth-telling: fully 90 percent of physicians surveyed stated that they preferred not to reveal a diagnosis of cancer to a patient (Oken, 1961). But change was coming. During the 1960s and 1970s, civil rights activists, antiwar protestors, and feminists challenged authority throughout American society. Another group besieged by criticism was the medical profession, whose members often treated patients in an arrogant or condescending manner. Women undergoing childbirth or treat-

302 Barren H. Lerner ment for breast cancer increasingly rejected the notion that doctors should make all decisions. Meanwhile, the law and the new field of bioethics also challenged the status quo, promoting both patient autonomy and informed consent. Essential to these principles was truth-telling. After all, patients could not meaningfully participate in their own care if they did not know the diagnosis. By 1978, only seventeen years after the JAMA article, a complete reversal had occurred (Novack et al., 1979). Ninety-eight percent of physicians reported that they told their cancer patients the diagnosis. I followed this ethical standard when I informed Jacqueline of her true diagnosis: stage III small-cell carcinoma of the lung. I also gave her some statistics about the very low survival rates from the disease. The news, I regretted, was not good. But as Jacqueline began her chemotherapy, our visits did not dwell on this unfortunate reality. She consistently informed me how well her treatment was going. It had made remarkably little impact on her daily life, Jacqueline stated. She was still climbing several flights of stairs to her apartment, maybe even faster than before. I also noticed that Jacqueline never said the word 'cancer' during our appointments. She also began to make some very optimistic comments. 'I'm glad we caught this thing in time,' she told me. 'I'm going to beat this,' she said, on more than one occasion. Red flags immediately went up in my head. As a historian, I worried that Jacqueline was lapsing into the same state of ignorance of earlier cancer patients. Didn't she remember that I had told her that she almost certainly had an incurable cancer? But, as with Grace, I decided not to correct Jacqueline's possible misperceptions. As a doctor, I knew that hope and denial were two powerful motivating forces for patients undergoing cancer treatment. Too firm a dose of reality, it seemed to me, was not the right answer. This focus on the hopeful continued even after Jacqueline's cancer recurred and then spread throughout her body. I never asked her if she knew she was dying. We talked about possible new treatments and whether her pain was under control. Yet having chosen this strategy, I did not ignore what was imminent. I gave Jacqueline a health care proxy form, which she filled out. We discussed her end-of-life preferences should she lose capacity to make decisions. I encouraged her to visit as much as possible with family and friends. Ultimately, the decision to protect my patient from harsh realities

Cancer, History, and Medical Practice 303

raised provocative questions about my historical knowledge. On the one hand, history revealed the dangers of well-meaning deceit. On the other hand, by historicizing what physicians had done forty years before, I had moved beyond assessing their actions by modern standards to develop some sympathy for their altruistic motives. Finding myself somewhere between complete disclosure and overt deceit, I was not sure if I had made the right choices with Jacqueline. I also confronted challenges regarding disclosure in the case of Anne, a sixty-nine-year-old woman with a history of breast cancer, several other medical problems, and a persistent smoking habit. Prior to an appointment with Anne in 1999, I had learned of a new study being done at our institution using CT scanning to detect early lung cancers in asymptomatic, seemingly healthy patients who smoked. The rationale for the test was a simple one: lung cancers found at an earlier stage would be more curable. However, this claim was pure conjecture. Immersed in my historical research, I had a lot of thoughts about the 'early detection' of breast, lung, and other cancers. The Breast Cancer Wars details decades of optimistic publicity about the value of breast self-examination and mammography in finding earlier, more curable cancers. Yet, I had concluded, such claims had routinely been oversold by a cancer establishment intent on presenting women with a hopeful message. Early-detection strategies, especially for women under age fifty, were more likely to lead to unnecessary biopsies and worry than to finding curable cancers. So my initial inclination was to omit any mention of lung cancer screening to Anne and my other patients who smoked. Just as with breast cancer screening, CT scans of the lungs might lead to operations that, in retrospect, would turn out to be unnecessary. But my historical research had underscored another important point. The decision to undergo a screening test, or, for that matter, any medical intervention, belonged to the patient, not me. While it was surely acceptable for physicians to give their opinions, they should not control medical decision-making. I had learned this lesson by studying the efforts of breast cancer activists in the 1970s. As had Grace fifteen years earlier, most women with a breast lump in the seventies underwent so-called one-step procedures, in which a mastectomy was done immediately if an intraoperative biopsy showed cancer. Several rationales justified this strategy, including the safety and convenience of having one operation instead of two. But for a woman to awaken without knowing whether she had

304 Barren H. Lerner

lost a breast was incompatible with the rising feminist sentiments of the era. As the early activist Rose Kushner convincingly argued, the onestep operation prevented women from actively participating in their medical care. While the woman was silenced under anesthesia, the male surgeon would obtain permission from another person, usually the patient's husband, to proceed with the mastectomy. Women activists of the 1970s also argued that physicians were not informing patients about a series of alternative procedures to the radical mastectomy. A few surgeons had begun to question the need for this operation as early as the 1930s, but this discussion was limited to medical meetings and journals. It was not until forty years later that Kushner and other activists 'outed' this controversy in women's magazines. Among the most impressive points that they made was to indicate how there was no valid scientific justification for radical breast surgery - only years of tradition. So I decided that Anne deserved to learn about the current debate over lung cancer screening. We discussed the pros and cons of having a CT scan, what was known and what was unknown. Ultimately, Anne decided to have the test. The result of the scan surprised everyone. The middle lobe of Anne's right lung was completely collapsed, the result, it was assumed, of an early cancer pressing on the bronchus leading to that portion of the lung. There was only one thing to do: open-lung surgery. After all, this scenario - the discovery of a silent lung cancer - was the exact one fo which screening CT scans were intended. But at surgery, there was another surprise. Anne did not have cancer. The lobe of the lung was collapsed but for no apparent reason. Perhaps it was due to the radiation treatment she had received for her earlier breast cancer. While this was certainly good news, unfortunate developments were on the horizon. Anne had an extremely rocky recovery from her major surgery, complicated by infections, and low blood pressure; at least once, she almost died. When she finally was discharged, months passed before she recovered her strength. Given this bad outcome, I felt obligated, both as a historian and physician, to revisit what had transpired. In a sense, I had chosen one historical lesson over another. Informing and empowering the patient, I had decided, was more important than protecting her from an unproven, potentially dangerous test. Yet, in doing so, hadn't I violated the venerable Hippocratic entreaty that physicians should 'do no harm'? Indeed, I knew for a fact that many of my colleagues, particularly those

Cancer, History, and Medical Practice 305

grounded in evidence-based medicine, were not even mentioning this still-experimental test to their patients. There was no easy answer to this conundrum, but my ability to frame this question in historical terms seemed to benefit my role as doctor. Like past physicians, I was confronting the allure and promise of a new, unproven medical technology. And, as doctors have always done, I was struggling with the compering desire to either inform or protect my patients. Paying attention to these enduring tensions, and even sharing them with my future patients, seemed advisable. Given the ways in which my choices so dramatically altered my cancer patients' experiences, I began to ponder another issue raised by my research into the history of breast cancer: do individual physicians have too much influence on their patients? The modern woman who raised this question for me was not my patient but a personal friend, Sharon, who developed a complicated case of breast cancer in 2000. Sharon proved particularly adept at gathering information from multiple physicians. Once again, history offered relevant precedents for Sharon's behavior. With little exaggeration, one can argue that it was breast cancer patients in the 1970s who 'invented' the second opinion. Armed with growing knowledge of treatment options and interested in exploring two-step operations, women like Rose Kushner had pressed physicians for information. Yet all too often, these inquiries were met with patronizing dismissal. 'Now you are being a very silly and stubborn woman,' a surgeon told breast cancer patient Babette Rosmond in 1971. 'You ask too many questions.' Frustrated and angry, these breast cancer patients actively sought out surgeons who, if not enthusiastic about doing less extensive operations, were at least willing to do so in certain cases. Thus, institutions, like the Cleveland Clinic, and certain breast surgeons, like the Clinic's George Crile, Jr, became beacons for women pursuing additional information. By the early 1980s, activists had actually induced several state legislatures to pass laws mandating that physicians inform breast cancer patients about all possible treatment options. Sharon was the modern descendant of these women. Learning the language of clinical trials, accessing the Internet, and speaking with breast cancer experts like Dr Susan Love, Sharon quickly generated an enormous number of questions for her doctors. Should she pursue treatment within a research trial or outside a protocol? In what sequence should she undergo surgery, radiotherapy, and chemotherapy?

306 Barren H. Lerner

Should she take tamoxifen, an anti-estrogen agent, in addition to her other therapy? How often should she get scans to make sure the medications were not damaging her heart? Sharon soon put my knowledge of breast cancer treatment to shame. A particularly instructive episode occurred when I accompanied Sharon to one of her appointments. Her treatment was at a crossroads. A new lump had appeared near her mastectomy scar, but her physician was inclined only to watch. Burned before by inaction, Sharon wanted a biopsy. Playing the role not of physician but friend, I observed this interaction with great interest. The doctor, indisputably good at listening to her patients, nevertheless became defensive as Sharon argued her case. Sharon persisted. The doctor would not change her mind, invoking her years of experience. This interaction was as vivid an example of patient autonomy as one could hope to see. To be sure, what I had witnessed that day was not a typical doctorpatient encounter. Being about the most empowered patient imaginable, Sharon cannot serve as a universal role model. The historical record clearly shows that most women, especially the poor, minorities, and the uninsured, do not possess her resources. Still, I could not help but be impressed at the high level of dialogue that I had witnessed and the eventual outcome - a compromise, in which Sharon would monitor the lump and the situation would be reassessed in one to two weeks. Sharon's case had underscored for me something on which both historians of medicine and practicing physicians can agree: medical practice is characterized by an enormous amount of uncertainty. As a historian, I had chronicled how sure-bet interventions, such as screening mammography and radical mastectomy, had proven less effective than expected. As a physician, I knew how clinical intuition - rather than hard data - determined much of what doctors recommended to patients. Given this pervasive uncertainty, an obvious lesson seemed to emerge from both history and clinical practice. Encouraging patients to ask as many questions as possible forces physicians to justify or reevaluate their advice, thereby promoting a more honest, even beneficial, doctorpatient relationship. Not all patients can afford second or even third opinions. But all are entitled to physicians who are willing to question 'business as usual.' Although clinician-historians are not necessarily better doctors or better historians than their colleagues who wear only one hat, their immersion in two worlds provides a unique opportunity to examine

Cancer, History, and Medical Practice 307

history and medicine. But the most important insight of the physicianhistorian may be to remind us just how little we still know about both the past and future interactions of doctors and patients. Acknowledgments The author would like to acknowledge the generous funding of the Greenwall Foundation and the National Library of Medicine. Ed Morman provided helpful comments. BIBLIOGRAPHY Back, A.L., R.M. Arnold, and I.E. Quill. 2003. Hope for the best and prepare for the worst. Annals of Internal Medicine, 138: 439^13. Campion, R. 1972. The Invisible Worm: A Woman's Right to Choose an Alternate to Radical Surgery. New York: Macmillan. Christakis, N.A. 1999. Death Foretold: Prophecy and Prognosis in Medical Care. Chicago: University of Chicago Press. Kolata, G. 2002. The painful fact of medical uncertainty. New York Times, 10 February, section IV, 5. Kushner R. 1975. Breast Cancer: A Personal and an Investigative Report. New York: Harcourt Brace Jovanovich. Lerner, B.H. 2000. The illness and death of Eva Peron: cancer, politics and secrecy. Lancet, 355: 1988-91. - 2001. The Breast Cancer Wars: Hope, Fear and the Pursuit of a Cure in TwentiethCentury America. New York: Oxford University Press. - 2002. When statistics provide unsatisfying answers: revisiting the breast self-examination controversy. Canadian Medical Association Journal, 166: 199-201. Novack, D.H, R. Plumer, R.L. Smith, H. Ochitill, G.R.Morrow, and J.M. Bennett. 1979. Changes in physicians' attitudes toward telling the cancer patient. JAMA, 241: 897-900. Oken, D. 1961. What to tell cancer patients: a study of medical attitudes. JAMA, 175: 1120-8. Rothman, David J. 1991. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making. New York: Basic Books. Ubel, P. A. 2001. Truth in the most optimistic way. Annals of Internal Medicin 134: 1142-3. Woloshin S., L.M. Schwartz, and H.G. Welch. 2002. Tobacco money: up in smoke? Lancet, 359: 2108-11.

Seeing through Medical History RUSSELL C. MAULITZ

In medical history, probably about as much as in any other kind of history, there is a lot to be said for a ripping yarn. I thought I was never very good at ripping a yarn. I studied the history of medicine for more abstract and abstruse reasons than that, I told myself; something about plumbing the 'structure of medical knowledge.' That was a high-sounding notion, and one that perhaps became much less fashionable for historians to explore. Maybe such a notion seemed to presuppose some acceptance of a 'truth value' in various groups' practices or habits of mind. An obstinate and probably misguided sense of adherence to this belief, that 'knowledge structures' deserved plumbing rather than deconstruction, sent me scurrying off later to spend more time exploring the neighboring discipline of medical informatics. Over time, I discovered that one could examine medical ideas (such as 'tissue theory' or 'medical police') from the historical, the narrativecwra-riterary, and formal information-structure perspectives. And at the end of the day, they all had something to teach. My own penchant for looking at medical information, from formal and abstract perspectives, using categories such as 'national styles,' led to odd corners. Throughout my younger life, it led me to avoidance of phenomena, such as what I used to think of as cultish hero-worship. In the 1980s, it led me to produce a monograph on the history of pathology that only feinted in the direction of a ripping yarn, but then sashayed from narrative to considerations of formal knowledge structures of nations and few heroes. In that volume, Morbid Appearances, published in the late 1980s, I was interested more in how ideas were received in new contexts than in how they were produced. And in those days, when I was still seeing very few patients, there was a somewhat bloodless quality to the affair,

Seeing through Medical History 309

to my own historical productions. Ripping yarns require flesh and blood, the animal spirits. Back then, I was concerned about how patients' caregivers saw their medical problems from a rather abstract and intellective perspective. Now I am more concerned about whether patients' caregivers will even be able to start to apply whatever diagnostic and therapeutic understandings they happen to be able to bring to bear on those patients. But an accumulation of gray hairs led me to discover the importance of locating embodiments of values and ideals about the theory and practice of medicine, such as William Osier, even while knowing full well that high-minded principles may prove anachronistic or unattainable in a New World Order of full-time, assemblyline physicians. But I digress: more on this point later. For now, let me set the stage in another way by describing a different sort of life event that led me to an understanding of the importance of narrative at the nexus of historical and medical thinking. Not entirely by choice, but ultimately with gratitude for the opportunity, sometime around the age of forty, I found myself suddenly moving through an odd career transition. Having been one of the few clinically trained physician-historians, if not the only one, with a primary appointment in a faculty of arts, I found myself propelled out of that world and into the medical one. I struggled to obtain board certification in a specialty and then ultimately to find jobs where I practiced up to half-time - and now more than ever - in a primary care setting, mixing this book's oddly commensurable activities in nearly equal quantities. Such an outcome is what the chemists call a 'meta-stable state,' which is a nice way of saying that it can be pretty unstable, as I now observe, practicing here in Philadelphia, on a nearly daily basis. Which probably explains why now, well into my fifties, I find the present circumstance almost as rare as when I started. Here I am writing for you a little something about the usefulness of medical history, all the while nervously expecting an e-mailed interruption containing the anxious plaint from a patient. That e-mail will, I think, provide the dreary details of a prescription denied her by one of America's uniquely salubrious, and historically antecedent-free, inventions: the Pharmacy Benefits Management (PBM) company. What can you do about this, doctor, and what can history tell you that might help? Maybe a lot. Maybe not much. But again I digress. What I should, in fact, say is that, depending on the social level at which they apply, I have come to both trust and

310 Russell C. Maulitz mistrust the lovely little historical lessons that crop up in my daily life as a clinician. Nowadays I am a clinician more days than not, a claim, I suspect, few academic physician-historians could or perhaps would wish to make. But amidst the chaos of this patient care, I begin to see a repetitive quality at the conjunction of history and the clinical life. The social life of the clinician in an early twenty-first-century world has become exceedingly strange and Sisyphean. For me, it is a world in which I attempt the primary care of a congregation ranging from homeless people to malpractice attorneys. At the most direct and minutely observed level, that is, in direct relation to the patient, I find a lot of most interesting historical gems, which I tend to trust. Through those historical antecedents, as if they were lenses, I can 'see' better what I am doing. Under a lower-power lens, as I look at the wider canvas, moving away from the patient and up towards groups and systems, I see an equally conspicuous skein of historical threads coursing through my work. These I trust much less. I see through them while seeing through them. In the twenty-first century, there is unquestionably now an existential crisis in medical life at this 'macro' level, where groups of doctors and whole populations of patients live. And thus my own mistrust of the guiding value of history in this case maps to such a larger crisis. Let me take both of these sources of historical insight in turn, ending, unfortunately but necessarily, with the more cautionary, macrosocial predicament of the millennial clinician. The Microsocial View: The Ancient Dyad The clinician's microsocial life revolves around something of the same 'dyadic' relationship as did that of the Hippocratic doctor. In terms of patients' expectations, not much has changed, a key point lost on today's policymakers here in the United States. Europeans understand it better: behind the exam room's closed doors, a physician and a patient occupy a space that has scarcely changed at all. A few homiletical examples come immediately to mind. The patient arrives, more often than not, with a self-limited disease except when, on rare occasions the disorder is life-threatening. The patient is, somewhat understandably, over-anxious about the self-limited disorder while, paradoxically, the next patient along minimizes her life-threatening problem. In both cases, I think of the ancient papyrus depicting the early physician's emphasis on the knife-edge between prognosis and therapy: 'This is a disorder that I will treat.' It is part of

Seeing through Medical History 311

the essential contract, the responsibility to avoid deception while optimizing relief, even if that relief is only symptomatic. I see this every day. To withhold the truth in a patient with anorexia nervosa, when that patient is minimizing her own illness, is as bad as withholding therapy from someone with a cold. That seems to hold true even if the therapy selected is minimalist or perhaps even ultimately 'futile/ when it can be seen as providing succor without actually harming the patient. It is why present-day primary-care doctors are increasingly embracing certain forms of alternative and complementary medicine if, as in the example of herbal therapy for the common cold, it can be shown to be at least innocuous. The Hippocratic physician thus advised primum non nocere (first do no harm): the clinician may provide or passively conspire in the administration of Echinacea, but eschew the dangerous (if yet commonly selfadministered) ephedrine. And it becomes simpler to understand how we all recoiled in July 2002, when hormone replacement therapy was suddenly demonstrated to be harmful. We were all found to be unwittingly complicit, as the new science outstripped our old belief systems about what helped our patients. I mentioned self-administration. It is, in the era of the Internet, a more common, or more commonly exposed, phenomenon. It has become trivial to order powerful and even dangerous remedies while wearing one's pajamas. I am reminded, as I see patients who do this, of the history of self-treatment, for which there is a long and hoary historiography. But today this history ramifies forward in time in some peculiar and fascinating ways. What of the 'N-of-1' trials - the anecdotes - that lead, in time, to more 'scientific,' randomized trials of physiologic, diagnostic, or therapeutic ideas? One thinks of Dr William Beaumont and Alexis St Martin, his gastric fistula patient, not to mention all the patients who no doubt fared far less well from 'N-of-1' experimentation. Nonetheless, here is the dirty little secret: clinicians often do exactly what patients do. Try this, then try that. As there is nothing unethical, much less illegal, about trying a new drug in an unorthodox setting, assaying, for example, agents in off-label indications, we prescribe gabapentin in pain syndromes or angiotensin-converting enzymeinhibitors in nonhypertensive diabetics. We 'push the envelope/ with the best of intentions: only to discover later that Good Science has caught up with our intentions. History frees us, in our own thought processes, to try such things, in that it provides many examples of

312 Russell C. Maulitz

similar scenarios. But history also ought to give us an idea of limits, on how far to push our luck in such settings. That is because some stories of 'pushed envelopes' end well. But, lest we forget, many do not, and we find ourselves having to backtrack. Will we soon look back on hormone replacement therapy as the latest heir to bleeding, cupping, and the application of the leech? In this respect, historical discourse, favoring, as it does, the winners, can in fact be misleading. Another way of thinking about this issue of 'winners and losers' is to observe the schism that arose among historians in the late twentieth century, between the 'old/ triumphalist history, favoring Great Successes in medicine, and the newer, debunking history that marginalized the importance of both Great Discoveries and those who applied the fruits of medical progress. But where within that elaborate schism is the historian who simply concludes, in the parlance of today's layman, 'sometimes you get the bear, and sometimes the bear gets you'? Another, related setting in which most of us find ourselves as we, the physicians, age our way to the other end of the stethoscope, is one of autoexperimentation. In helping treat my own chronic ailments (so far none of them, fortunately, terribly ominous), I think of the lineage of scientist-patients who, like Andre Cournand and Werner Forssmann, engaging in the catheterization of their own hearts, turn their own bodily frames into subjects of scientific, clinical scrutiny. And in doing so, I become much more empathic about the similar chronic problems from which my own patients suffer. Now, are any of these glimpses of past-and-present really reliant on the insights gained from formal instruction in history? Perhaps historical memory - memory of memory - can remind me, as I confront the patient, of the malleability and elasticity of everything I 'explain' to my patient. But otherwise, I think mostly not. A number of present-day writers, ranging from Rita Charon to Samuel Shem (Stephen Bergman), have pointed to the value of the narrative - the patient's narrative and our own - in understanding what we do as clinicians. They are passionate about the value of this thing, the story, in humanizing the doctorpatient relationship. But wait - not just humanizing: that word has, through overuse, become flattened out and lost most meaning. There is no verb, quite, for what history in particular may provide to me in a room with a patient. 'Contextualizing/ in this intimate surround, sounds, too, surprisingly vacuous. It is some sort of empathic smoothing or filling of the

Seeing through Medical History 313

gulf between the two actors, a strange and wonderful alchemy: every contributor to this volume, and many others, will know exactly what I mean. History is as good a way as any to find one's way into this groove. And yet, this groove is oddly solipsistic - it is not, really, something one tends to share with patients (or with colleagues who are not historians for that matter). Confronted on many occasions, for example, with patients suffering from what I deemed to be non-ulcer dyspepsia, I was also confronted with the temptation, succumbing at times, to bring up old William Beaumont and old Alexis St Martin, he of the gastric fistula. I explained how the one studied the environmental influences on the ailment of the other. Many's the patient who has made it a cakewalk for me, by asking 'Can stress be causing this pain I'm having?' In such instances, I will respond, I have responded: 'Of course. I know your work is not going well. I know things have been better at home. We know from long experience that at times like this, folks get this kind of pain you are having. It all started, in fact, with old William Beaumont and his patient back in the nineteenth century. That patient could be relied on to turn his stomach lining all red and ugly when things were tough for him - and Dr Beaumont would watch it happening, up close and personal.' Never once, though, did my patient turn back to me and say, 'But was Alexis St Martin as neurotic as I am?' The patient role is a furiously selfish one, and the contract says we, the physicians, must honor that. Or take my oldest, wholly compos mentis patient, a lady long years ago up from Virginia, a lady who never engages me without the following reminder: 'This world is getting to be a sorry place. It was a whole lot better before. And you know what else? That Hoover was a faggot.' And I always get to say: 'Do you mean Herbert or J. Edgar?' So far, I have not had a straight answer. I do not know which Hoover. But it hardly matters. What does matter is my fear that this lovely, clear-headed, if not especially politically correct, nonagenarian may soon be thrust back into the world of pre-New Deal, pre-Great Society health care. I fear that the world of Hoover (pick one), redivivus, will render this lady unable to see me. I fear her slow, backward slide down the razor blade of cost cutting by agencies and legislators who have forgotten the social contract. I will see her for free if I have to, and if I can. But I am not a free agent. Sadly, I conclude that the ladies and gentlemen to whom I am accountable may make it impossible.

314 RusseU C. Maulitz

The Macrosocial View: Crowding the Dyad But now, gentle reader, the historian-and-clinician-rolled-into-one leaves the examination room and the individual patient, and enters the hurlyburly of 'the medical system.' The historical lens, necessarily, changes its focus to something more sweeping and broad-based. And here, my trust of history is sorely challenged. Thus, when I leave the microsocial world of my exam room, where doctor meets patient, there is a more somber feeling in the macrosocial world of the early twenty-first-century clinician. This is the world in which clinicians increasingly see themselves simply as cogs. By 'macrosocial/ I mean the larger space into which players, both altruistic and profit-seeking - but mostly profit-seeking even if 'nonprofit' - have been crowding into that exam room with me and my patient. Pharmacy Benefits Management company officers, risk managers, hospital managers, physicians-turned-business administrators, drug company executives, durable equipment managers, everything managers: all good folks, I am certain. But they are atomized into a circus of Brownian motion of cost shifting, wherein the next deal to be cut drives individual careers forward and raises company margins, without helping my patient. These people are palpable: I feel them there. I hear them through my stethoscope. They remain in the room with me long after the patient leaves. I fear we are all careening toward some sort of event horizon that my intellectual grandfather, Owsei Temkin, perhaps only dimly imagined in the last decade or two of his life-century. But, I think, perhaps he did imagine it. I think about Temkin's magisterial 1991 description of the late Hippocratic physician in an era of Christians and pagans whenever I contemplate modern hospitals with their large-bore technologies as the dominant institutional driver of the careers of physicians, particularly academic clinicians. The subtext of that volume was the manner in which the ethos of the Hippocratics l^red true': that the microsocial skein of expectations around patient and physician would always, ultimately, trump the distortions imposed by the macrosocial pressures from without. At this same 'macrosocial' level, another irony - indeed, another perversity - arises as one looks back over the history of the professions. Of late, nursing has come under enlightening scrutiny as a sister profession, a subject worth its own separate chapter in this or a similar volume. As a result, my colleagues in both clinical nursing and nursing

Seeing through Medical History 315

history tell me that the nursing 'career ladder' was historically a big problem. It was a framework for life's labors in which talented professionals needed to leave clinical practice as they advanced, or else they failed to advance. But in the past decade or two, advanced practice nursing is slowly, painfully, but surely, coming of age and gaining hold in legislatures. Together with the nursing shortage of the late twentieth and early twenty-first centuries, it has created real pressures for change in this formula. And just as nursing is beginning to clean up its own house and 'gain the power/ is it not ironic, is it not just a wee bit perverse, that medicine is backsliding down that same road? Today's clinician, if she is a physician, is finding that the path to advancement is to leave the clinic and become (fill in the blank) a department chair, a quality officer, a health maintenance organization medical director, a laboratory chief, a venture capitalist, a dean, a management consultant, a hospital chief medical officer, and so on. The top academic officers for clinical departments used to be master clinicians. Now they are just as likely to be MBAs. And, given the milieu, that is adaptive, but not without a cost. I am here to tell my readers that such leaders who know how to reward a new kind of commoditized productivity fail, often miserably, to recognize the first thing about quality. Or even evidence. But prescription for this ailment is really beyond us. As the saying goes, the tough thing about prediction is knowing what is going to happen. The existential question becomes whether the age-old 'dyad,' physician and patient, can and will retain something irreducible, in its essence, to serve as the wellspring of a return to Temkin's Hippocratic ideal. I have not a clue. Here the macro and the micro collapse into one. What happens in the larger compass will, I believe, determine what is possible in that of the one-on-one, physician and patient. Or is it the other way around? Odd: I know all this history, and yet I have no idea about the direction of the causal arrow. It seems perverse: I understand the value of history better in the 'micro' world, where doctor meets patient, but do not feel particularly comfortable parading that to my patients. In the 'macro' world, it ought to be much more socially useful, but the value of the historical record is a muddle. Meanwhile, the notion of 'corporatization' in medicine will surprise or shock few if any readers of this volume. It is now a well-worn lament, at least among some physician-historians. All I wish to do in this little screed is to point to one particular wrinkle in this late

316 Russell C. Maulitz twentieth-century historical truism about corporate medicine. Namely, the problem is more serious than the upwelling of statism and dirigism in health care. (In fact, I am not even certain that either of those 'isms' is, in itself, a bad thing.) Rather, it is the particular, chaotic flavor of late twentieth-century health-care dirigism that, in the United States, may lead to a particularly pernicious, unforeseen consequence. My concerns are analogous to those of economic historians who ask, 'What happens when interest rates go to zero?' The answer to that one is the event horizon: the rules change. In such circumstances, further reduction in interest rates ceases to obey historical 'rules.' What happens when 'the physician' ceases to be a determining or even meaningful identifier? What happens when 'medicine' simply denotes a Tower of Babel housing the urologist owning the lithotripsy machine, the business-administration major deciding the rules of acceptable risk in the examination room, the primary-care clinician willingly cramming too many patients through the assembly line, or the radiologist investing in yet another magnetic resonance imaging machine? What happens when the physician-patient dyad loses its internal gyroscope? It seems at least possible that today's situation, for the physician claiming 'professional' status, whatever that now means, has become truly unprecedented in the macrosocial sense. Maybe there are no historical precedents. Maybe Temkin's Hippocratic physician can no longer find the fulcrum on which to fashion a lever to right the system of health care. Maybe it is simply every man and woman for him- and herself. That is what I meant earlier on in this essay by 'trusting history.' Walt Kelly, the cartoonist, through Pogo, his leading character, once wrote about the phenomenon 'we have met the enemy, and he is us' (figure 39). In this scenario, the issue is no longer one of the healer having 'time to heal.' To paraphrase Gertrude Stein, there is no healer there. The Hippocratic physician has ceased to be a meaningful actor in this scenario, where the chairman is a businessman and not a master clinician. In actual fact, I no longer feel certain what scenario we are in. Of one thing I am quite sure: not enough clinician-historians are out there to serve effectively as the sentinels before this particular event horizon. We clinician-historians in this book are like 'snail darters,' those small fish in the American deep south, surviving in a couple of remaining habitats, their population having dropped below the evolutionary event horizon. In the meantime, and against all odds, in the past year having in-

Seeing through Medical History 317

39 Was Walt Kelly's character, Pogo, presciently considering the future of medicine when, over thirty years ago, he noted that 'We have met the enemy and he is us'? The author wonders whether his own intellectual grandfather, Dr Owsei Temkin, would accept or reject the 'end-of-history' idea that medicine's internal gyroscope may, finally, be faltering in the twenty-first century. In other words, does the core value-set of doctors, the 'soul' that permitted the Hippocratic physician to survive earlier eras of destabilization, still have any of its independent momentum? Figure reproduced with permission of the family of Walt Kelly. Copyright OGPI 2000.

318 Russell C. Maulitz

creased my own clinical involvement to 250 percent of what it was a year ago, I cannot evince a great deal of gloom. Let me say this in a different way. As a historian, I see room for gloom, and I find less and less relevance in what most historians write about the science and practice of medicine (present company in this book excluded). But as a clinician, locked in the dyad until seven o'clock tonight, the picture looks remarkably less gloomy, and I am not even sure why. Except that I have a little lady from Virginia to attend to. I know I can see through medical history, but I also know I cannot see through her mysteries. And that feels all right - far more all right than the obscurations of my vision into the future of the physician in our present economy. What I do know, finally, is that my nonagenarian, the lady from down south, will be happier to see me than she would to see Hoover. One of those Hoovers. BIBLIOGRAPHY Cournand, Andre, and Michael Meyer. 1986. From Roots - to Late Budding: The Intellectual Adventures of a Medical Scientist. New York: Gardner Press. Forssmann, Werner. 1974. Experiments on Myself: Memoirs of a Surgeon in German]/. New York: St Martin's Press. Maulitz, Russell C. 1987. Morbid Appearances: The Anatomy of Pathology in the Early Nineteenth Century. New York: Cambridge University Press. Temkin, Owsei. 1991. Hippocrates in a World of Pagans and Christians. Baltimore: Johns Hopkins University Press.

Index

absinthe, 142 academic medicine, 27, 34, 40, 21617, 280, 294 Acapulco, 142 accident, 51 Ackerknecht, Erwin H., 5 acne, 31 acute abdomen, 96 addiction, 61,166, 254, 261 Addison, Thomas, 21 Addison's disease, 123. See also adrenal gland administrators, 28, 69, 84, 287, 294, 313, 314, 315-16 adrenal gland, 118,120,121 adrenaline, 165, 166 adult respiratory distress syndrome, 208 Africa, 77, 80, 81,120, 222 African-Americans, 85, 176, 213-25, 230, 233, 254, 270-8 aging, 12, 98 AIDS, 64-8, 70-2, 73, 75-7, 80-5, 222, 226, 234 Alabama, 217-20 Alcmaeon, 50 alcohol, 289, 291

Alfred the Great, 39 allergy, 287 alternative medicine, 191, 197, 311 altruism, 77 Alving, Alf S., 176-7 American Academy of Pediatrics, 147 American Association for the History of Medicine, 5, 20,170, 201 American Medical Association, 101 American Osier Society, 5 American Pediatric Society, 106 American Psychiatric Association, 140, 240 American Revolution, 189 amnesia, 134 anachronism, 295, 309 anatomy, 5 ancient history, 3-4, 50, 66, 90-1. See also Hippocrates anemia, 172, 220 anesthesia, 5, 23, 24, 40,164,166, 168, 262, 304 angina, 191-2, 197-8 Annales school, 10, 32 Ann Arbor, Michigan, 156 anorexia nervosa, 311

320 Index anthrax, 224 antibiotics, 35, 40, 58, 60, 63, 65, 67, 69, 82, 89, 90,113, 207-8, 226, 228, 230, 233, 276, 290; resistance to, 76, 235 antisepsis, 5, 30-1,161,164 anxiety, 84,138, 266, 303, 309 appendicitis, 39, 226 apprenticeship, 202, 203 Aries, Philippe, 35 Aristotle, 37 army, British, 49-55; U.S., 176,184 arrogance, 10, 257, 259, 267, 301 Asher, Richard, 137,141 Asia, 60,173 Asser, Bishop, 39 Associated Press, 220 asthma, 31,196, 270, 271, 272, 276 Austin, Dr, 264-6 Australia, 147 autopathography, 9, 151-7, 260-6 autopsy, 25, 89,165, 218 AZT, 76, 84 Baby Doe, 106,108 Baghdad, 33 Baker, Jeffrey P., xv, 9,10,11,12, 105-15 Bakwin, H., 113 Bald of Wessex, 39 Bangladesh, 56-8 barbiturates, 261 Barnes, Benjamin, 102 Bates, Donald, 74 Baudelaire, Charles, 142 Bayer, Ronald, 82 Beall, Dr, 265 Beaumont, William, 311, 313 Beeuwkes, Henry, 80 Belkin, Gary, xv, 10,11,12, 236-47 Bergman, Stephen, 312

Berlin, Irving, 19 Berman, Paul, xv, 10,11, 201-9 Bethesda, Maryland, 69 Beutler, Ernest, 176-8,179,180,183, 184 Bible, 28, 214

bimaristan, 33 bioethics. See ethics bioterrorism. See terrorism; war bipolar disorder, 238 Birmingham, 101 bleeding. See bloodletting; hemorrhage blood, 171-84, 215 bloodletting, 39, 74, 76,165, 312 blood pressure, 98,103, 224, 232, 283, 304 blood transfusion, 121,125,174, 235 books: advice, 151,152; of fiction, 29, 37,136; historical, 56, 73,136, 223, 267, 290, 299, 303, 308, 314; making of, 37-8; medical classic, 22, 25, 56, 73,189, 194, 196; medical textbooks, 50, 54, 59, 111, 112,173, 174,196, 206; school, 213 Boston, 61, 68,100,191, 227, 232 botany, 194 Bowdon Medical School, 203 Braasch, William. 101 brain, 70, 207, 252, 270 Braslow, Edithmae, 260-6 Braslow, Joel T., xv, 9,10,11,12, 251-68 Braslow, Lawrence, 252, 262, 263 Braudel, Fernand, 32 breast cancer, 173, 299-307 breast-feeding, 28-9,109-14, 118 Brieger, Gert, 27, 74 Britain, 8, 22, 39,102,135,147,154, 155,189,192,194, 201, 233

British Medical Journal, 167

Index 321 British Virgin Islands, 197 Brock, Lord Russell, 22 Brown University, 203 Brown v Board of Education, 213

Bryan, Charles S., xvi, 11,12, 73-86, 234 Budin, Pierre, 107 Bunyan, John, 91 bureaucracy, 279, 280, 283, 309, 313 Burger, August, 136 burnout, 76,118, 265 Calabria, 49-55 California, 58,178,183, 262 Cambridge University, 53 Cameron, M.L., 38 Canada, 38,147,161,163,180, 234 Canadian Medical Association Journal, 167 cancer, 65, 92,118, 299-307; of lung, 301^1. See also breast cancer; tumor Canguilhem, Georges, 5 cardiac resuscitation, 192, 272, 288, 291 caring, 81-2,107,108,198, 206, 215, 217, 260, 267, 269, 271, 277 catheter: cardiac, 117, 312; urinary, 21,110, 270, 271 Catholicism, 33, 213. See also religion Centers for Disease Control, 220 charity, 291, 294 Charon, Rita, 312 chemotherapy, 82, 215, 302, 305 Cheyne, George, 161 Chicago, 214 childbirth, 97,108,112,118,132, 280, 301 childhood, 35, 42. See also pediatrics children, 36, 43, 82, 83,131-4,136-7,

146-58,172,173, 252, 277, 278; abuse of, 138-9; development of, 151-7 China, 70, 234, 284 Chinatown, 232 chlorpromazine, 256, 257 cholera, 233, 234 Christmas, 289 cirrhosis, 295 civil rights, 301 Civil Rights Act (U.S., 1964), 220 class, social, 12,105, 292. See also poverty Cleveland Clinic, 305 clinical trials, 76,196,197, 222, 233; randomized, 76, 311. See also experiments; Tuskegee clinicians, 6, 7,12, 20, 30,124. See also doctors; historians; medical practice; physicians Clinton, William, 220 Clio, 3,4, 6, 9,10,11,12,15,19,131, 297. See also history cocaine, 166,167, 254 College of Physicians of Philadelphia, 290 coma, 270-8 comfort, 77, 216, 246, 257 commodification of medicine, 85, 315 communication, 109, 226, 230, 232, 274 communism, 50, 51 compassion, 39, 84, 85, 258 competence, 51, 75, 82, 84, 238, 243 Cone, Thomas, 111 confidence, 159, 227 consumption, 64,196, 230. See also tuberculosis contextualization, 30,105, 242, 256, 312

322 Index Cooke, Helena, 194 Cooper, Sir Astley, 21, 22 Cope, Zachary, 96 coronary artery disease, 192. See also angina corset, 98, 99,102 courage, 77, 81, 223 Cournand, Andre, 312 crawling, 146, 151-7 cremation, 53 Crenner, Christopher, xvi, 9,10, 11, 269-81 Crile, George, 305 crisis, 89-91; Dietel's, 96; health care, 310 Crotone, 49-55 CT scan, 59, 71,116,120,132, 206, 303, 304 Cule, John, xvi, 9,11, 49-55 Cullen, William, 189 culture, 12, 30, 237, 240, 242, 253, 256, 259 Gushing, Harvey, 21, 30 Dalhousie Medical School, 161, 163 Dapsone, 173-5,176, 179-80,181-3 Daremberg, Charles, 5 Dartmouth Medical School, 56 Daughters of the American Revolution, 288, 291 Davis, Mary Ellen, 156 DDT, 55 deafness, 163 death, 10, 39, 64,181, 301; of children, 82,109,139,146; of doctors, 77, 80,163,196; of patients, 89, 901,161-9,197, 215, 256, 278, 280; rate of, 111, 139,146, 208, 218, 302 de Broglie, Louis, 31 decision making, 109, 275-6, 303

Defoe, Daniel, 56, 59, 60, 65, 67, 71 dehydration, 110-14, 206, 265 Delaware Valley, 288 delusions, 238, 239-40, 244, 254 dementia, 31 Deming, Claude, 98-9 dentistry, 287-8 depression, 89, 301; economic, 232 dermatitis herpetiformis, 173 dermatology, 175,179,184 Dern, Raymond J., 176-7 diabetes, 81, 224, 311 diagnosis, 9,13, 24, 33, 58, 59, 69, 71, 90, 93, 96, 97,102,131-8,141,143, 167-8,192, 206, 227, 238-45, 262, 266, 284; differential, 58; historical contingency of, 245, 257, 267; retrospective, 11, 161-7; revelation of, 301-3 Diagnostic and Statistical Manual (DSM), 140, 240, 244, 245, 259 dialysis, 40, 82, 93, 94, 95, 283 Dietl, Josef, 98 digitalis, 189-98 dilatation, urethral, 164-8 disclosure, 301-3 discovery, 10, 178 diseases: chronic, 216; classification of, 238-9, 240, 259, 265; concepts of, 5,13,165,197, 233, 238-9, 243, 258-9; defunct, 87-126; ecology of, 234, 235; new, 129-58. See also specific disease names; epistemology disseminated intravascular coagulation (DIC), 207 divorce, 89,143 doctors, 40-1. See also clinicians; historians; physicians; surgeons dogs, 95

Index 323 Donald, David, 74 Dore, Gustave, 136 Dotten, Dale, 170,174,175,178, 179-80 doubt. See skepticism; uncertainty Down syndrome, 106 dream, 27 dropsy, 192,197 drugs, 43, 63, 66, 84, 76, 91,165-7, 173, 265, 311; psychotropic, 256; side effects of, 84,173-4,196, 238, 255, 267, 302. See also addiction; treatment Dubos, Rene, 70 Duffin, Jacalyn, xvii, 3-15, 170-85, 284 Duke University, 201, 203 Durham, North Carolina, 201, 234 dyspepsia, 313 Echinacea, 311 Eco, Umberto, 37 ecology of disease, 234, 235 economics of health care, 280, 291, 314-16 Edinburgh, 161,163,164,191,192 Edinburgh Dispensatory, 196 education, 213-14. See also teaching Ehrlich, Paul, 60 electrocardiogram, 116, 120-25, 227, 290 electroconvulsive therapy (ECT), 258 electroencephalogram, 134, 271 electrolytes, 116-25 Ellis Island, 227, 228 emergency, 56, 59, 60, 63, 68, 69,137, 270; historical, 27, 28 empathy, 20, 312. See also caring Empedocles, 54

empyema, 228 endocarditis, 61 endoscopy, 5 England. See Britain enzymes, 173,176,184, 311 ephedrine, 311 epidemics, 47-86,151,154, 232, 233 epidemiology, 140, 147, 218 Episcopalians, 291 epistemology, medical, 13, 120, 240, 243, 246, 258-9, 267, 308. See also disease concepts; paradigm eponyms, 21, 98,170 errors, medical, 39,19, 217-20, 227, 244. See also iatrogenic disease Estes, J. Worth, 5, 8, 203 ethics, 11, 30, 77, 80, 81, 91,106,108, 217-20, 234, 246, 258, 272^, 276, 277, 300, 301-2, 303, 311 eucaine, 165,166,167 Europe, 28, 33-4, 35, 60, 92, 97,163, 191, 310 evidence, 12,147,182, 236, 238, 244, 279 evidence-based medicine, 305 examination, physical, 12, 36, 38, 54, 57-9, 70, 92, 93,132-3,170,192, 206-7, 208, 219, 271, 291, 295 experiments, 95, 196, 217-20, 223, 252, 312 explanation, 113, 167, 180, 211^7, 239, 242, 251, 312 facts, 39, 50, 76,123, 236, 258 fads, 102-3 fathers, 35,139,143,151,152, 201, 252. See also physicians favism, 173,178 fear, 54, 77,182, 207, 215, 217, 221, 222, 234, 240, 260-1, 266

324 Index Feinstein, Alvin, 206 Feldshuh, David, 223 Fellini, Federico, 287 feminism, 301-2 fever, 23, 39, 54, 56, 57, 58, 64, 89, 90, 207, 230, 233; cat scratch, 58; inanition of newborn, 110-14 Fildes, Luke, 82, 83 Fillini, Marcello, 50-1 Fleming, Peter, 155 Florida, 209 folk medicine, 192-4,196,198, 232 Forssmann, Werner, 312 Foucault, Michel, 42 foxglove, 189-98 fracture, 133 France, 5,106,107,170 Franklin, Benjamin, 189 Freeman, R. Austin, 284 Freeman, Walter, 252 Fuchs, Leonart, 194 fun, 21 futility, 249-95, 311 G6PD, 173,174,176-8,184 gabapentin, 311 Galen, 3,19, 40 Garrison, Fielding H., 5 gastrostomy, 208, 271, 277, 311, 313 gay bowel syndrome, 64 gay men. See sexuality gender, 12,105. See also women genetics, 178, 220, 229 George Washington University, 252 Germany, 8, 134-6 giardia, 60, 63, 66 Gilman, A., 166 Glenard, Frantz, 98 Glinski, L.K., 118 Goodman, L.S., 166

Gourevitch, Danielle, 85 graduation ceremony, 31-2 Grmek, Mirko D., 5, 8,170 Gross, Samuel W., 76 guilt, 90, 220 Gutenberg, Johannes, 37 gypsies, 232-3, 238 Haiti, 70-1, 72 Halifax, 163,164 haloperidol, 255 Halsted, William, 21, 30 harassment, 237 Harris, H.A., 53, 54, 55 Harvard University, 61, 221; Business School, 191; Medical School, 29,68 Harvey, William, 22 Hattie, Dr, 163 Hayne, Roselle, 80 Hayne, Theodore Brevard, 77-81 headache, 57-9, 69-70,138 heart disease, 22, 61,116, 191-8, 196, 208, 227 Heinz bodies, 172,174,176,177 Heisenberg, Werner, 10, 31, 201, 206 Heller, Jean, 220 hematology, 170-84, 207. See also laboratory Hemingway, Ernest, 142 hemoglobin, 171-2, 177, 178 hemorrhage, 117,118,137,166 hepatitis, 60, 63, 66 herbal remedies, 192,194, 232, 311 Herodotus, 50,115 heroin, 61 Hippocrates, 3, 9, 40, 56, 64, 66, 71, 85, 90, 91, 304, 311, 314, 315, 316 historians: all doctors as, 71, 236; amateur, 19; clinician, 3, 5, 6, 7,12,

Index 325 19, 20, 31,105, 203, 251, 299-300, 306, 309-10, 316; patients as, 226, 229; professional (PhD), 5, 7, 20, 105 Historical Journal of Massachusetts, 201 historical reasoning, 12 history, 68, 71-2,105,108-9,141; conferences of, 131,134,141, 201, 203; as consultant, 9,11,17-45, 168, 206, 209; in diagnosis, 56-60, 131-58,159-86; fosters 'travel,' 12, 137; gives comfort, 77, 246, 257; gives courage, 77, 81, 215; lessons from, 20, 41, 68,183, 217, 221-2, 224, 267, 303, 306, 310; limited usefulness of, 11-12,105, 297-318; makes better doctors (or not), 85, 146, 235, 236, 251, 258, 267, 306; methods of, 8, 28,115,154,161, 176; multiple views of, 301; problems with, 114; resembles medical practice, 12, 32, 71; studies of, 21, 38-9, 53, 68, 73-4, 82,105-6,151, 201-3, 254, 290; usefulness to medicine, 3, 8,19, 105,109-10, 114-15,125,143,157,167-8,176, 183,198, 209, 223-4, 226, 227, 236, 237, 240, 246-7, 251, 258, 306-7, 309. See also Clio; patient history; writing HIV, 66, 68, 67, 71, 72, 80, 84, 234. See also AIDS Hoare, Sarah, 196 Hodgkin's disease, 178 Holland, 93 Holland, Warren, 77 Hollywood, 40, 60,154 Holmes, Oliver Wendell, 29, 191 Holmes, Sherlock, 37

Holt, L. Emmett, 111, 112,113,152 homelessness, 238 homeopathy, 191 Hoover, Herbert, 313, 318 Hoover, J. Edgar, 313, 318 Horace, 54 hormones, 227, 306, 311, 312 Horwitz, Allan, 259 hospital: Bellevue (NYC), 291; Boston Children's, 28; Boston Deaconess, 234; Brigham and Women's, 68-71; British General, 53; Camarillo State, 252; Dalhousie Stationary, 163; Guy's, 22; Halifax Infirmary, 164; Johns Hopkins, 21; Kings College, 49; Mount Sinai (NYC), 202; New York Babies, 111; Ottawa General, 170; Patton State, 260, 261; Pennsylvania, 189; San Francisco General, 57-61, 64, 71; Veterans Administration, 254, 28395; Yale-New Haven, 23 hospitals, 33-4, 50, 64, 89, 90,106, 116,120,142,163,175, 214, 216, 227-9, 231, 232-3, 270, 271, 276, 280, 291, 299, 300, 315; community, 64, 92; state, 256, 257, 260, 262 house calls, 208, 276-7, 280 house staff. See residents Howard University, 221 Howell, Joel D., xvii, 9,11,12, 21325, 233 hubris, 257, 267. See also arrogance Hudson, Robert, 102 Huisman, Frank, 6 humility, 10, 40,164,179, 227, 257, 307 humoral theory, 194 Humphreys, Margaret, xviii, 9, 10, 11,12, 34, 221, 226-35

326 Index Hunter, John, 21, 201 Hutton, Mrs, 194 hydrocephalus, 43 hydrotherapy, 261 hypertension. See blood pressure hypochondria, 133 hypoglycemia, 224 hypothermia, 110 hysteria, 138, 245 iatrogenic disease, 164 immigrants, 56-60, 70, 92,171, 2279,232 immune system, 65, 71, 91 incubator, 106-7 Index Medicus, 122 infant feeding, 29,109. See also breast-feeding infectious disease medicine, 59, 63, 66, 75, 82, 208, 233, 235 infertility, 117 influenza, 230, 231, 234 informed consent, 217, 300. See also ethics insulin, 81, 224 insurance, 97, 278, 281 Internet, 184, 305, 311 interviews, 260 intubation, 65, 207 Iowa State University, 231 iron, 172,182 Israel, 239 Italy, 49-55; immigrants from, 232 Jarcho, Saul, 5, 8, 202 Jaspers, Karl, 244, 245 Jenner, Edward, 201 Jews, 173, 213, 227, 228, 232 Johns Hopkins School of Medicine, 73,74

Journal of Laboratory and Clinical Medicine, 176 Journal of the American Medical Association (JAMA), 227, 301, 302 journalism, medical, 75, 94, 96,114, 118,125,156, 220 journals, 121,122,131, 140 Kahn, Richard J., xviii, 9, 162,189200 Kaufman, Martin, 201 Keirns, Carla C, xviii, 9,116-27 Kelly, Walt, 316, 317 Kennedy, John R, 213 kidneys, disease of, 40, 92-104,139, 172,176,197, 284, 285; floating, 92-104; stones of, 96, 98 Kierkegaard, S0ren, 28-9 King, Lester S., 5, 8 King, Jr, Martin Luther, 214 Kirk, Stuart, 259 Knights of Columbus, 95 knowledge. See epistemology Kocher, Theodor, 22 Kolata, Gina, 156 Kolff, Willem, 93, 94 Krakow, 98,118 Kushner, Rose, 304, 305 Kutchins, Herb, 259 laboratory investigations, 54, 58, 76, 97,110,132,139,142,174,178-9, 181,184, 207, 219 Lahey Clinic, 192 La Jolla, California, 178 Lancet, 137,138 language, 3, 31, 40-1; Arabic, 37; English, 50; French, 24-5, 41,178; German, 41, 97,136,194; Greek, 3, 37; Italian, 50; Japanese, 97; Latin,

Index 327 3, 37, 82; medical, 227; Old English, 29, 38; Portuguese, 41; Russian, 97; skills in, 156; Spanish, 41 law, 27-8,106,120,138,139, 213, 242-3, 245, 302, 311, 313. See also regulation; policy leeches, 39, 40, 312 Lerner, Barron H., xviii, 9,10,11,12, 299-307 lessons of history, 20, 41, 68,183, 217, 221-2, 224, 267, 303, 306, 310 leukemia, 207 libraries, 11, 21, 97,114,122,154, 202; College of Physicians of Philadelphia, 290; Gushing Whitney Medical Library, 20; National Library of Medicine, 197; Pennsylvania Hospital, 190-1; South Caroliniana, 77 Lindskog, Gustaf Elmer, 23, 24-6 Linnaeus, Carolus, 194 Lister, Joseph, 20, 30,161,163,164 Lister, R.P., 74 literature, 122,131,140,189, 223; historical, 291. See also books; journalism Littre, Emile, 5 liver, disease, 176,197, 293. See also cirrhosis; hepatitis lobotomy, 252-3, 256, 258 London, 22, 49, 66, 67, 71, 82,102, 136,161,163,164,192 longue duree, 10, 32, 269 Los Angeles, 75 Lou Gehrig's disease, 178 love, 19, 35, 37, 75, 77,134, 274, 283

Love, Susan, 305 Lucian, 137 Ludmerer, Kenneth, 279

lumbar puncture, 110, 207, 219 lung, disease of 64-5, 82, 207-9, 230, 234, 301-4 lying, 91,137,180-4, 219, 228. See also ethics; malingering; Munchausen syndrome; truth Macon County, Alabama, 218, 220 mafia, 51 magazines, 74,117,152, 284, 304 Maine, 191,192 Majno, Guido, 38 malaria, 54-5, 80, 92,176, 218, 230; as therapy, 258 malingering, 142,180,182. See also Munchausen syndrome mammography, 303 Manchuria, 70 Manhattan, 29 mania, 245 manuscripts, 37-8, 113, 310 Maritime Medical News, 164,167 Markel, Bess Rachel, 151-7 Markel, Howard, xix, 9,10,11,12, 34,146-58 Markel, Kate Levin, 154 Martensen, Robert L., xix, 9, 10, 11, 12, 56-72 Massachusetts, 201 mastectomy, 299, 300, 303, 306 Maulitz, Russell C, xix, 11, 308-18 Mayo, William, 100 Mayo Clinic, 101 McGill University, 163 McNeill, William, 56, 70, 71 Meadow, Roy, 138,141 measles, 35 media, 103,152,156-7,180, 223 Medical College of Pennsylvania, 283, 289, 294

328 Index medical informatics, 308 Medical Officer of Health (MOH), 53^ medical practice, 8,163,174, 237, 245, 269, 280, 314-18; as art and science, 206; resembles historical practice, 12, 71. See also history medical school, 33, 73, 74,143,151, 202-3, 214-15, 294. See also by name medieval history, 27-45 Medline, 97,122,197 Meharry Medical College, 221 memory, 131,163,191, 222, 226, 232, 236, 252, 312 meningitis, 207 menstruation, 117, 118 mercury, 285 methemoglobinemia, 171-84 Mexico, 120,131,134,142,143 Meynier, Charles, 4 microscope, 5, 54, 60,176-7, 207 Mildvan, Donna, 84 milestones, developmental, 151-7 military service, 49-55,136, 138, 2602, 287. See also army; war miracles, 243, 244 Mississippi, 213 mistakes. See errors, medical Mongolia, 92 monkeys, 80 Montgomery, Alabama, 220 Montreal, 175,179 morality. See ethics Morgagni, Giambattista, 20 mortality. See death Moses, John, 113 mosquitoes, 76, 77, 80 Moss, Sandra W., xx, 9, 92-104 mothers, 28-9, 35, 69,106-9,112,117,

139,141,142-3,147,152,154, 213, 230, 232, 260-6, 270-8 Moulin, Anne Marie, xx, 9,11, 89-91 MRI scan, 59,120, 206 Munchausen syndrome, 131-45, 180 Munchhausen, K.F.H. Baron von, 131^5 Murray, T. Jock, xx, 9,11,161-9 mushrooms, 143 Muslims, 57 Mussolini, Benito, 55 myths, 221 myxedema, 122,123. See also thyroid gland narrative. See stories National Institutes of Health, 69 National Library of Medicine, 197 Nazis, 93 Nemerov, Howard, 31 neonatology, 105-15 nephrology, 82, 93,120, 289, 294 nephropexy, 93, 98 nephroptosis, 92-104 neuroscience, 69, 70, 71, 134,138, 143, 207, 253, 255 neurosis, 101, 313 New Deal, 313 Newfoundland, 180 New Guinea, 260 New Jersey, 92, 95, 96 New Orleans, 232, 234 New York City, 34, 71, 72, 111, 112, 172, 202, 232, 234-5. See also Manhattan New York Times, 34, 35,156 New Zealand, 147 Nobel prize, 171, 206, 220 North Carolina, 230, 234 Nova Scotia, 163

Index 329 Nuland, Sherwin B., xx, 9,10,11,1926 nuns, 92-3, 170-84 Nunziante, General, 55 Nuremberg, 219 nurses, 30, 77, 92, 95-6, 111, 165,173, 174,175, 208, 219, 221, 233, 234, 255, 273, 278, 283, 288, 289, 300, 314-15 Oberlander, Gerhard, 136 observation, 12, 245, 246, 292 obstetrics, 106-9, 121 Odysseus, 105 opacity, 11, 217, 227 operation. See surgery ophthalmoscope, 5 opinion, second, 178,183, 224, 305 Oppenheimer, Gerald, 82 orthopedics, 133-4 Oski, Frank, 151 Osier, William, 9,19, 20, 73, 75, 85, 91, 97,101,165,191,198, 309 Ottawa, 170,174,178,179,182,183 ovary, 118,196 oxidation, 172, 179,183 oxygen, 171, 207-8, 270, 271, 287 pain, 57, 69, 96,101,132^, 137,138, 141,173,179, 206, 302, 311, 313 palliative care, 278, 302 Paracelsus, 19 paradigm, 5, 10 paranoia, 224 paraplegia, 283 parchment, 37-8 Pare, Ambroise, 25 Paris, 89 Paris Green, 55 Parkinson's disease, 255

Parks, Rosa, 220 paternalism, 241, 301 pathology, 24, 38, 75,117,118, 239, 240, 253, 292, 308. See also laboratory patient blaming, 223 patient history, 12, 30, 38, 71,132-4, 226-35 patient records, 24, 56,109,132,140, 201, 202, 260-6, 276, 300 patients: 'Abby/ college student, 206-7; 'All/ from Bangladesh, 5660; 'Anne/ smoker with lung lesion, 303-4; baby Bess Markel, 151-7; difficult, 94,138; families of, 91,113,167-8,171,178,183, 222, 228, 233, 271-8, 302, 304; farmer with urethral stricture, 164-7; 'George/ boy, 131^, 141-3; 'Grace' with two mastectomies, 299-301, 303; 'Greg,' gay man, 645; 'Jack/ elderly man with respiratory failure, 207-9; 'Jacqueline/ with lung cancer, 301-3; 'James/ with schizophrenia, 254-6, 257; 'Jeanne/ Haitian mother, 69-71; '{Catherine Scott/ comatose mother, 270-8, 280; man with pneumonia, 89-91; man with unknown fever, 54; Mary Sewell, 241-2; mistrustful man with diabetes, 224; mistrustful man with leukemia, 215; 'Mr Lipsig' of Poland, 227-9; nonagenarian lady from Virginia, 313, 318; 'Robin/ from jail, 237-45; 'Sharon/ with breast cancer, 305-6; 'Sister Lucia/ nun, 6,170-84; 'Susan/ with low sodium, 116-27; "Thomas Doubting/ executive, 191-2, 197-8;

330 Index woman from Alabama, 230; woman with renal transplant, 95; young man with pleural effusion, 23-4 Pauling, Linus, 220 Pediatrics (journal), 156 pediatrics, 28-9, 31, 35,105-15,13145,140,146-58, 260-1 Peitzman, Steven J., xiii, xx, 10,11, 283-95 penicillin, 89, 207, 219 Perelman, S.J., 284 Perlson, Dr, 264-6 Peter II of Russia, 136 pharmaceutical industry, 198, 253, 314. See also drugs pharmacology, 166-8, 197, 257 Pharmacy Benefits Management, 309, 314 Philadelphia, 283, 285-95, 189-91, 283-95, 309 Philippines, 92 phthisis, 230. See also tuberculosis physician-patient relationship, 34, 102, 215, 216, 222, 275, 310-14, 315, 316 physicians, 34,101,106,122, 125, 164,171,189, 218, 271, 273, 305; all are historians, 71, 226, 236; immigrant, 92; as parents, 73, 85, 201, 251-2, 260-6; as witnesses, 278. See also clinicians; doctors; historians physiology, 114 Pickering, Andrew, 237 Pickstone, John V., 237 Pictou, Nova Scotia, 163 Pirogev, Nikolai, 243 pituitary gland, 117-25 placebo, 76

plague, 34-5, 49, 53, 56-60, 65-6, 67, 70, 76, 232 Plague of Athens, 53 Plasmodium falciparum, 54 Plato, 90 Pneumocystis pneumonia, 234 pneumonia, 11, 64-5, 89-90,116, 207-8, 227, 228, 234, 276, 299 pneumothorax, 53 Poe, Edgar Allan, 142 poetry, 74-5,196 Pogo, 316, 317 poison, 172,179, 232, 285 Poland, 227 policy, 30, 72, 310 poppers, 63, 66 positivism, 9. See also facts potassium, 121 poverty, 218, 272-3, 278, 291-2, 306 power: of doctors, 34,125, 216, 242, 244-5, 292, 294, 269, 305, 315; of history, 114, 269; of patients, 34, 246, 276, 304, 306 Prague, 134, 136 Prchal, J.R, 175,178,179-80 pregnancy, 31 117,118,123,132, 147 prejudice, 240, 273, 278. See also race; segregation prematurity, 106-15, 147 presentism, 246 Price, Dr William, 53 primaquine, 176 prison, 237, 238 problem-solving, 9 professionalism, 81, 84, 85, 314-15 profit, 120, 314. See also economics prognosis, 13, 33,108,140, 238, 31 psychiatry, 138,139,142,143,182, 236-47, 251-68

Index 331 psychoanalysis, 134, 142, 253 psychosis, 142, 238, 239, 257, 265, 266 public health, 29, 53, 67, 68, 80,147, 154, 218, 226, 232, 233, 242 pulmonary embolus, 165 Punch magazine, 74 Pythagorus, 50, 54 quackery, 203 Quakers, 291 quarantine, 34, 67,151, 232 Queretaro, 131,140,142 questions: about history, 30, 42, 109, 227, 236, 251, 253, 269; of medicine, 42,106,107,109,183, 226, 305; by patient, 306; of patients, 180, 216, 273; of self, 239, 266-7 quinine, 232 Quinlan, Karen Ann, 106 race, 12, 85,105,184, 213-25, 273, 275, 306 radiation therapy, 92, 304, 305 radiology. See X-ray Raspe, Rudolph Erich, 136 reasoning, 12. See also history reduction, 172 refugee, 57,180,183. See also immigrants regulation, 34. See also law religion, 12, 67, 143,181,182, 237-45, 314 repetitive strain injury, 92 research: historical, 53,105,106,107, 109, 111, 142,157,168, 201, 223, 230, 237, 260, 299, 303; scientific, 29-30, 69, 80, 84,124,176,182, 217, 226, 294 residents, 11, 21, 22, 58, 69-70, 90,

105,132,151,168, 222-3, 224, 251, 253, 254, 260-1, 267, 287, 289, 292 respiration, artificial, 165 respirator, 207-8, 234, 272 Reverby, Susan, 223 Rhazes, 35 Riddle, John, 38 Riesman, David, 73 risk, 67, 77, 81,114,139,146-7,155, 174,196, 215, 230, 267,273, 314 Rivers, Eunice, 219, 221 Robinson, Edward G., 60 Rochester, NY, 170 Rockefeller Archive Center, 79, 81 Rockefeller Foundation, 80 Rockport, Maine, 191 Rogers, Fred B., 290 Rosen, George, 5 Rosenberg, Charles E., 81, 290, 291 Rosetta Stone, 154 Rosmond, Babette, 305 Ross, Donald, 22 Rotch, Thomas Morgan, 29 Roueche, Berton, 172 rubber gloves, 30 rubella, 226 Rush, Benjamin, 189, 190, 191 Russia, 136, 232, 243 Sacks, Oliver, 3 St Martin, Alexis, 311, 313 Salvarsan, 219 San Francisco, 56-68, 72, 232 Santayana, George, 192 Scanlon, Matthew, 279 Schalick, Walton O., xxii, 9,10,11, 12, 27-45 schizophrenia, 138, 238, 239-10, 254, 255, 262, 266 schools, 213-14; Sunday, 214

332 Index science, 39, 43,196,197, 220, 237, 242, 244, 245, 267, 280, 294, 304, 311, 312, 318 Scotland, 284 'Scott, Patricia/ 271-8 Scripps Clinic, 178 'scrubbing in/ 30-1 seeing, 308-18. See also observation; opacity segregation, 214 seizure, 138 sepsis, 207; neonatal, 110,112 severe acute respiratory syndrome (SARS), 234 Sewell, Mary, 241-2 sexuality, 66; gay, 60-4, 76, 235 sexually transmitted disease (STD), 59, 64. See also syphilis sexual orientation, 12 Shaker community, 241 shame, 54,184, 220, 229, 242, 260 Shannon, Dr, 264 Sheehan, Harold L., 117, 118 Sheehan-Simmonds syndrome, 11627 Shein, Max, xxii, 9,131-45,180 Shem, Samuel, 312 shigella, 60, 63, 66 Shropshire, 192, 194 Sicily, 51, 54 sickle cell anemia, 220 Sigerist, Henry E., 5 signs, 13, 56, 90,139,197, 218, 238 Silverman, William, 106, 108 Simmonds, Morris, 118 Simpson, O.J., 93 Singer, Charles, 5 sinusitis, 69, 70 Sisyphus, 310 skepticism, 13, 71,138,191,192,198, 256, 266

sleep position, 147-51 smallpox, 35, 53 Smith, Betty, 29 smoking, 146-7, 230, 303 Snow, C.P., 73, 85 social responsibility, 82 social worker, 260, 272 society, 30, 35, 67, 76, 85, 235, 236, 240, 242, 244, 246, 253, 256, 257, 258, 291, 310 sociology, 34, 237 sodium, 116-25 South Carolina, 74, 75, 77 Southwick, Moses, 203, 204, 206-9 Soviet Union, 97. See also Russia Spain, 143 specialties, 107,108, 235, 253, 309 spittoon, 284-5 Spock, Benjamin, 152 Sprengel, Kurt, 5 Sri Lanka, 170,173,174,180,181,184 Stanford University, 61 Star Trek, 40 Stein, Gertrude, 316 Stenlake, J.B., 166 sterilization, 258 stethoscope, 5, 25, 312, 314 Stewart, John, 161-9 stigma, 229, 260, 266 stillbirth, 109 stories, 6, 8,19, 21, 22, 51, 81, 92, 95, 96,109,134,136-7,143,161,171, 182,192-7, 226, 236, 284-5, 301, 308-9. See also patients Strauch, Barbara, 156 streptomycin, 60 stress, 313 stroke, 224 students, 11, 21, 32, 33, 42, 49, 53, 68, 77,110,146,157,163, 222, 230, 251, 295

Index 333 sudden infant death syndrome (SIDS), 146-51,155 suicide, 142,182, 254, 256, 301 surgeons, 93, 98, 100-2,131,141, 201, 243, 262, 305 surgery, 5,19-26, 30-1, 93, 97-103, 122,125,132-3,138,142,161, 201, 252-3, 256, 273, 292, 299, 300, 304 Swift, Jonathan, 137 symptoms, 93,101,137-8,139,172, 191-2,197, 218, 227, 230, 241, 255, 256. See also patients syphilis, 118, 219, 221, 226, 233. See also Tuskegee Tamoxifen, 306 Taranto, 53, 54 tardive dyskinesia, 255 Tate Gallery, 82 teaching, 11,19, 21, 38, 59, 68, 76, 147-51,155,168, 222-3, 226, 230, 258, 294-5, 308 technology, 5, 40, 59, 69, 84, 85,1067,125, 234, 270, 275, 280, 305, 316 television. See media Temkin, Owsei, 5, 8, 74, 314, 315, 316 temperature. See fever; hypothermia Temple University School of Medicine, 290 terrorism, 35, 181 testes, 132-3,141 therapy. See treatment Thompson, St Clair, 161 thoracotomy, 24 thyroid gland, 118,120,121 timelessness, 9-10, 41-2,168, 233, 242, 245, 251, 267, 269-81 Tolkien, J.J.R., 34 tonic, 232 Toronto, 174,178,179

Toulouse-Lautrec, Henri, 142 toxic shock, 58 toxins, 174 toxoplasmosis, 71 tracheostomy, 270, 271, 277 tranquilizers, 257 Traube's space, 170 travel, 137 treatment, 9,13, 98,102,125,187209, 215, 219, 241, 242, 253, 260, 261, 302, 305-6, 311. See also surgery trust, 179, 215-17, 218, 223, 233, 267, 310, 314, 316 truth, 35, 37,181, 215, 223, 259, 267, 280, 301-2, 308 tuberculosis, 29, 60, 76,118,196, 227-9, 230 tularemia, 58 tumor, 118,173, 301 Turin, 25 Tuskegee, Alabama, 213, 217-25, 233 Twain, Mark, 102 Tylenol, 57 typhus, 232 Ulrich, Laurel Thatcher, 241 uncertainty, 10-11, 31, 39, 198, 201-9, 239, 240, 256, 262-4, 266, 306 Union Medical Association (UMA), 202-6 United States, 34, 76, 81, 82,120,154, 155,189, 232, 239, 246, 280, 310-18 United States Constitution, 217 United States Public Health Service, 147, 218, 221, 233 universities, 33, 40. See also academic medicine University of Bristol, 155 University of Chicago, 214

334 Index University of Massachusetts Medical School, 202 University of Michigan Medical School 151 University of Pennsylvania, 285, 294 urethral stricture, 164-8 urology, 97,101 vaccination, 5, 53, 201, 222, 233 ventilator, 65, 207-8 Vesalius, Andreas, 19 veterans, 287-95 veterinary medicine, 50, 54, 55 Vikings, 39 Virginia, 313 vitamins, 63,191, 192 Vogel, Morris,, 290 Vonnegut, Kurt, 6 Voting Rights Act (U.S., 1965), 220 Wales, 49, 53 Walton, Douglas, 77, 81 war, 49-55, 57,181; American Civil, 73, 217; First World, 163; Second World, 93, 219, 233, 260-2, 301 Waring, Joseph, I., 75 Warner, John Harley, 6 Washington, D.C., 155 Watts, James, 252 weaning, 28-9

Whiggism, 19 White, Ryan, 85 'white out lung/ 11, 23, 65, 89, 207, 208, 227 'Who knew?' (or equivalent), 10, 103,175, 208, 299 Wilder, Abel, 203, 205-9 Williams, Dr, 264-5 Williams, J. Whitridge, 109 Williamsburg, 290 Wintrobe, Maxwell, 173 Withering, William, 189, 190,192-8 women, 98,101, 299-307. See also feminism; mothers Women's Medical College, 289 Woodlands cemetery, 285, 286 Worcester, Massachusetts, 202, 203 work, 20, 80, 84, 236, 240, 265, 299. See also burnout wound, 24 writing, 37-8, 94, 96,113-14,157; of history, 27,105,107,151, 201, 203, 267, 299, 308 X-rays, 5, 23, 65, 89,133,192, 207, 208, 227, 228, 289. See also CT scan Yale University, 20, 98, 221 yellow fever, 77, 80, 232, 234 Yersinia pestis, 34, 59-6