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Cancer, AIDS, and Quality of Life Cancer, AIDS, and Quality of Life Cancer, AIDS, and Quality of Life Cancer, AIDS, and Quality of Life Edited by Jay A. Levy University of California San Francisco, California Claude J asmin H6pital Paul Brousse Villejuif, France and Gabriel Bez Ministere de la Sante Publique Paris, France Springer Science+Business Media, LLC Llbrary of Congresl Cataloglng-In-Publlcatlon Data InternatIonal Councll for Global Health Progress. Internatlona Conferance (2nd : 1998 : ParIS, Franca) Cancer, AIOS, and quallty of Ilfe I edlted by Jay A. Levy, Claude Jas.'n, and GabrIel Bez. p. c •. ·Proceedlngs of the Second InternatIonal Conferenca of the InternatIonal Councll for Global He.lth Prograss (ICGHPI, hald January 16-17, 1998, In ParIS, France"--T.p. varso. Include. blbllographlcal referances and Index. ISBN 978-1-4757-9572-1 ISBN 978-1-4757-9570-7 (eBook) DOI 10.1007/978-1-4757-9570-7 1. Cancar--Patlants--Cara--Congresses. 2. AIOS (Olsaase)­ -Patlants--Cara--Congrassas. 3. Quallty of llfa--Congressa •• 4. Ter.'nal cara--Congrasses. 1. Levy, Jay A. II. Jas.ln, Clauda, 1938- III. Bez, Gabriel. IV. Tltle. RA646.C3168 1996 382.1'SS9792--dc21 97-6782 CIP Cover design by Georgia Kalnin Proceedings of the Second International Conference of the International Counci! for Global Health Progress (lCGHP), held January 15 - 17, 1996, in Paris, France ISBN 978-1-4757-9572-1 © 1997 Springer Science+Business Media New York Originally published by Plenum Press, New York in 1997 Softcover reprint ofthe hardcover Ist edition 1997 http://www.plenum.com AII rights reserved 1098765432 No part ofthis book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission from the Publisher CONTRIBUTORS George J. Annas, M.P.H., Professor of Health Law, Schools of Medici ne and Pub­ lic Health, Boston University, Boston, Massachusetts Mohammed Bedjaoui, President, International Court of Justice, Member, UNESCO Bioethics Committee, The Hague, Netherlands Robert N. Butler, M.D., Professor of Gerontology and Geriatrics, Director, Interna­ tional Longevity Center, Mount Sinai Medical Center, New York, New York Daniel Callahan, Ph.D., President, The Hastings Center, Briarcliff Manor, New York Stephen K. Carter, M.D., Senior Vice-President of Research and Development, Boehringer lngelheim Pharmaceuticals, Inc., Ridgefield, Connecticut Robert E. Cawthorn, Chairman of the Board, Rhone-Poulenc Rorer, lnc., Col­ legeville, Pennsylvania Paul D. Cleary, Ph.D., Visiting Associate Professor, School of Public Health, Co­ lumbia University, New York, New York Eka Esu-Williams, M.S., Ph.D., AIDSCAP, Calabar, Nigeria Alvan R. Feinstein, M.D., Professor of Medicine and Epidemiology, School of Medicine, Yale University, New Haven, Connecticut Harvey V. Fineberg, M.D., Ph.D., Dean, School of Public Health, Harvard Univer­ sity, Boston, Massachusetts Lieve Fransen, M.D., Ph.D., European Commission, Advisor, Development Coop­ eration, Brussels, Belgium Robert J. D. George, M.D., M.R.C.P., Senior Consultant, Palliative Care, Univer­ sity College London, Camden & lslington Community Health Services. National Health Service Trust, London, England Vassilis Georgoulias, M.D., Professor of Oncology, University of Crete, Director, AIDS National Reference Center of Crete, Crete, Greece Sonta M. Hunt, Ph.D., Health Research Consultant, London, Founder and Head, European Group for Quality of Life and Health Measurement, London, England Claude Jasmin, M.D., F.A.C.P., Professor of Oncology, Chairman, Department of Hematology, Immunology and Biology, Hopital Paul Brousse, Villejuif, France C. R. 8. Joyce, Ph.D., FBPsS, Department of Psychology, Royal College of Sur­ geons, Dublin, Ireland Jean-Michel Lassauniere, M.D., Palliative Care Team, Hotel Dieu, Paris, France Jay A. Levy, M.D., Professor, Department ofMedicine, Research Associate, Cancer Research Institute, University ofCalifornia School ofMedicine, San Francisco, California V vi Contrlbutors Joanne Lynn, M.D., M.S., Director, Center to Improve the Care of the Dying, George Washington University, Washington, D.C. Peter Maguire, M.D., Director, Cancer Research Campaign, Psychological Medi­ cine Group, Christie Hospital, Manchester, England Joan Marks, Director, Graduate Programs in Human Genetics and Health Advo­ cacy, Sarah Lawrence College, Bronxville, New York Paul A. Marks, M.D., Ph.D., President, Memorial Sloan-Kettering Cancer Center, New York, New York M. Federico Mayor, Director General, UNESCO, Paris, France John Orley, M.D., M.R.C.P., Senior Medical Officer, Mental Health Promotion, Program on Mental Health, World Health Organization, Geneva, Switzerland Patrice Pinell, M.D., Director, INSERM U 158, University Rene Descartes, Paris, France Peter Piot, M.D., Director, Division of Research and lntervention Development, Global Program on AIDS, World Health Organization, Geneva, Switzerland Joan Rovira, Ph.D., Department of Economics, University of Barcelona, Research Director, SOIKOS, S.L., Center for Applied Studies in Health Economics and Social Pol­ icy, Barcelona, Spain Lisbeth Sachs, Ph.D., Department of International Health and Social Medicine, Unit of International Health Care Research, Karolinska Institute, Stockholm, Sweden lbrahim M. Shoaib, M.D., Professor, Faculty of Medicine, Tanta University, Tanta, Egypt Robert A. Zittoun, M.D., Professor and Chairman, Department of Hematology, Hotel-Dieu, Paris, France PREFACE This volume contains selected contributions from individuals who attended the Sec­ ond International Conference of the International Council for Global Health Progress (ICGHP) held at UNESCO in Paris, France, on January 15-17, 1996. This conference brought together experts in many disciplines that deal with the devastating diseases of cancer and AIDS with a focus on the concerns for quality of life. The ICGHP fosters mul­ ticultural and, multidisciplinary approaches to global health problems to help influence governments and other international health organizations to emphasize prevention and care of diseases and to understand their scientific, social, and cultural features. The Coun­ cil encourages the interchange of information on health problems and policy and supports educational funding for the public at large. Its objective is to effect diseases-free lives in the world community. Participants of the conference included scientists, sociologists, government leaders, physicians, health care providers, epidemiologists, religious leaders, company officials, ethicists, and philosophers. They examined and discussed the many variables involved in quality of life for people affected with cancer and with AIDS. The volume's text begins with introductory comments by officials attending the JCGHP conference. Subsequently, a chapter is dedicated to one aspect of quality of life, be it definition, scientific research, evolution, cultural changes, ethics, measurements, or other issues dealing with health care and treatment survival. The second part of the volume includes commentaries dealing with fi ve aspects of quality of life which merit consideration. It is the hope of the Council and the participants of this conference that the contributions presented in this volume will help detine further the impOitance of quality of life in dealing with any illness, but particularly with cancer and with AIDS. These diseases affect not only the patient but the patient's family, the community, and the doctor/patient relationship. AII of these participants in health care de­ livery need to be considered in the final approaches at bringing the best quality of life to the individual. Jay A. Levy, M.D. San Francisco Claude Jasmin, M.D. Paris Gabriel Bez Paris ACKNOWLEDGMENTS The Second International Conference was held under the auspices of the President of France, Jacques Chirac, the President of the European Commission, Jacques Santer, and the Director General of UNESCO, Federico Mayor. The volume's editors would like to acknowledge the patronage of the following: The French Ministry of Public Health; Mr. Philippe Douste Blazy, Minister of Culture; the European Academy of Arts, Sciences, and Humanities; UNAIDS; INSERM (National Institute of Health and Medical Research); ANRS (National Agency for AIDS Research); Assistance Publique, Hopitaux de Paris; Faculty of Medicine Paris Sud, University Paris XI; Foundation de France; and the IUCC (International Union Against Cancer). The Conference was substantially supported by contributions from the following organizations: Commission Europeenne, Foundation de France, Foundation Goldsmith, Syndicat National de !'Industrie Pharmaceutique, Bristoi­ Myers Squibb, Lafon, Rhone-Poulenc Rorer Foundation, Roche, Sandoz, Sanofi Win­ throp, Synthelabo, and Theramex. Moreover, we acknowledge the support of Amgen, Janssen-Cilag, Wyeth-Lederle, Pharmacia and Upjohn, and Shering-Plough. Wc also thank Asta Medica, Chiron (France), Ernst & Young International, Glaxo Wellcome, Jour­ nal du SIDA, Lavoisier Abonnements, Institut Lilly, Leo Research Foundation, Lco (France), Mapi Research Institute, Pierre Fabre Medicament, Cabinet Reussites - Re­ sources Humaines, Regimedia S.A., Servier, Societe Fran~ţaise de Lymphologie, and Zeneca Pharma for their help with the Conference. Finally, the editors would like to thank Dr. Peter Berczellcr and Christine Beglinger for their help in the preparation of this vol­ ume and acknowledge the assistance of the Coordinating Committee: Regine Boutrais, Catherine Guyot, Michele
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