Palliative Care This page intentionally left blank Palliative Care The 400-Year Quest for a Good Death Harold Y. Vanderpool McFarland & Company, Inc., Publishers Jefferson, North Carolina ISBN 978-0-7864-9799-7 (softcover : acid free paper) ISBN 978-1-4766-1971-2 (ebook) ♾ LIBRARY OF CONGRESS CATALOGUING DATA ARE AVAILABLE British Library cataloguing data are available © 2015 Harold Y. Vanderpool. All rights reserved No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying or recording, or by any information storage and retrieval system, without permission in writing from the publisher. On the cover: clockwise from top left hospice nurse with patient (Stockbyte/Thinkstock); Doctor Onstine, medical doctor, making an examination, 1943 (Library of Congress); Doctor and nurse examining patient in hospital room (Digital Vision/Thinkstock); The doctor’s office on Transylvania Project, Louisiana, 1940 (Library of Congress); Intensive Care Unit (iStock/Thinkstock) Printed in the United States of America McFarland & Company, Inc., Publishers Box 6¡¡, Je›erson, North Carolina 28640 www.mcfarlandpub.com For Jan This page intentionally left blank Table of Contents Acknowledgments ix Preface 1 1: From Proclamation to Recognition: 1605–1772 5 2: Minute Details and Codified Conduct: 1789–1825 23 3: That Science Called Euthanasia: 1826–1854 39 4: Polarities Between Attention and Disregard: 1859–1894 58 5: Challenging the Overreach of Modern Medicine: 1895–1935 76 6: Never Say Die Versus Care for the Dying: 1935–1959 93 7: Times of Momentous Transition: 1960–1981 112 8: Progress, Threatening Seas, and Endurance: 1982–1999 140 9: Choices: 2000 to the Present 173 Epilogue 207 Chapter Notes 211 Bibliography 243 Index 265 vii This page intentionally left blank Acknowledgments Research on the topics in this history began when I wrote the first of two master’s degree theses as a Kennedy fellow in medical ethics and the history of medicine at Har- vard University. Upon becoming an assistant professor in the history and philosophy of medicine in the Institute for the Medical Humanities at the University of Texas Med- ical Branch (UTMB) in Galveston, my research continued in the form of publishing a number of articles and book chapters; teaching courses on death, dying, and human suffering; and walking medical wards (including those for oncology) with senior physi- cians and medical residents. Physician friends, colleagues, and authors have been my teachers. When I became an associate and then a full professor in UTMB, I enjoyed greater opportunities to conduct research in the United States and abroad. My appointment as James Wade Rockwell Professor in the History of Medicine furthered those oppor- tunities. This book reflects how I profited immensely from working at different times with the staffs and archival holdings of the Wellcome Library in London, the Royal Physicians of Edinburgh Library, the University of Edinburgh Library, the Royal College of Physicians of London Library, the British Library in London, the Countway Library of Medicine in Boston, and the main University of Texas Library in Austin. Beyond these institutions and their invaluable resources, I profited from extensive research for long periods of time in the Moody Medical Library of UTMB, especially research in its outstanding Truman Blocker History of Medicine Collections. I can hardly convey my great fortune in working with one of the Blocker Collections’ stellar archivists, Robert O. (Bobby) Marlin IV. As I searched through card catalogs to find promising historical sources, Bobby retrieved numerous volumes for me to explore. He then enabled me to secure copies of the valuable sources. He also readily contacted archivists elsewhere to secure copies of books and articles from other institutions. In addition to Bobby’s assistance, staff members of the Moody Medical Library enabled me to identify and secure hundreds of articles from medical and other journals, past and present, through UTMB’s superb article retrieval services. With respect to the topics in this book, the term research is open-ended. It includes visiting and counseling with dying patients, doing rounds in internal medicine, having back- and-forth exchanges with medical students and graduate students in the medical humanities, and spending countless hours searching out web resources. It also includes talking and exchanging emails with friends and family members struggling with the deaths of loved ones. On occasion I confess to putting on the mantle of Samuel Taylor ix x Acknowledgments Coleridge’s ancient mariner, who stopped a man going to a wedding feast to speak of matters the stranger resisted hearing. The motivation to undertake this quest surely also arises from the deaths of my parents—the tragic death of my father at the end of my sophomore year in high school and the peaceful passing of my mother late in life. Beyond all other acknowledgments, I am indebted to my beloved wife Jan, to whom I dedicate this book. Together we traveled to the libraries I’ve listed, all surrounded by intriguing cities filled with museums, restaurants, and historical sites. Within and out- side the cities are stunning natural settings travelers like ourselves are lured to walk and ride carts through—golf courses. Beyond these attractions, however, are Jan’s patience and expertise. She has not only responded to my time- consuming questions— and surely, at times, off- putting obsessions—but also, based on her professional expert- ise in English, edited all four drafts of this book. (“Edit” is shorthand for accurate writing, deletions of repetition, and questions that call for answers.) As soulmate and helpmate, she is an abiding source of inspiration. Preface The 400-year quest of palliative care is a living story about dying. (The term pal- liative care refers to the use of medical measures to ease or palliate the symptoms of critically ill and dying persons, combined with personalized and respectful caring.) This history brings to life the centuries-long quest for good death with the aid of physicians, nurses, clergy, social workers, and other healthcare professionals. The last parts of the story focus on the nature of palliative care at the present time—descriptions of the types of care available in homes, hospices, and hospitals; the duties of various healthcare professionals; symptom- easing care for patients with non- fatal conditions; the various choices seriously and terminally ill patients and family members are ethically and legally empowered make; the difficulties accompanying differing options; and ways of dealing with these difficulties. This 400-year quest serves as an empowering resource for grappling with death and dying at the present time. It is also intriguing, in that it displays all the features of classic quests: treasured goals, daunting obstacles, travels through unfamiliar domains, and conflicts between protectors and abusers. Unlike mythological quests, however, this story is rooted in history. It relies upon a vast number of sources and wide experiences that ensure historical accuracy. It trav- erses centuries of the past and persists in the present. It pursues the treasured goal of enabling persons to experience peaceful dying, to experience death as good by means of medical and other measures from skilled caregivers who assuage oppressive symp- toms and provide emotional and spiritual comfort grounded in moral respect. Daunting obstacles include centuries of struggle with humankind’s greatest enemy— death. The struggle encompasses fighting against the use of punishing and futile medical treatments for persons approaching the end of life, finding ways to ease pain and other physical symptoms, overcoming widespread neglect, liberating dying persons from loneliness and isolation in hospitals, changing entrenched cultural dynamics of modern hospitals, and securing patient rights of choice. Travels through strange cultural settings include journeys through eras far removed in time from our own and separated from ordinary life experiences in recent decades. Bygone medical cures that radically differ from modern modes of treatment are explained and explored. Readers are also taken inside modern hospitals and introduced to tech- nologically sophisticated ways of saving and sustaining human life. Life- sustaining tech- nologies are magnetically attractive to patients and family members, and understanding their benefits and harms is imperative for end- of-life decision making. 1 2 Preface Protectors and abusers refer to shapers of this history, many of whom are immensely admirable, inventive, caring, brave, and protective. In opposition, others manifest insen- sitivity, single- mindedness, and shocking obliviousness to the suffering of dying persons, the agonies of families, and the moral dimensions of respectful human relationships. Coinciding with its personal value and historical intrigue, this study is crafted with a devotion to scholarly accuracy. I have drawn upon a vast literature on clinical medi- cine, medical research, palliative care practices and advocacy, personal testimonials, biomedical ethics, death and dying, the law, and the history of medicine and culture. My identification and securing of primary sources included funded research in notable archival collections, such as the Wellcome Library in London, the Royal Physicians of Edinburgh Library, the Royal College of Physicians of London Library, the Countway Library of Medicine