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

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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 Liegeon, Catherine Toesca, and Rebecca Bokhobza.

ix CONTENTS

INTRODUCTION

Cancer and AIDS as a Model for the Study ofQuality oflife Claude Jasmin

United Nations Educational, Scientific, and Cultural Organization 5 M. Federico Mayor

Joint United Nations Program on HIV/AIDS (UNAIDS) 7 Peter Piot

CANCER, AIDS, AND QUALITY OF LIFE

1. Problems in Defining Quality of Life ...... Il Alvan R. Feinstein

2. How Does Basic Research in Cancer and AIDS Approach the Concern for Quality oflife? ...... 17 Jay A. Levy

3. The Evolution ofQuality oflife 37 C. R. B. Joyce

4. Quality of Care for Cancer and AIDS 45 Robert J. D. George

5. Changing Our Metaphors to Put Quality of Life at the Center of Health Care 55 George J. Annas

6. Uses of lnformation about Health-Related Quality of Life in Patients with AIDS and Cancer ...... 63 Paul D. Cleary

7. Improving the Quality oflife of Cancer Patients 73 Peter Maguire

xi xil Contents

8. How Does the Cost of Care Intluence the Effectiveness ofHealth Care Delivery? 77 Joan Rovira and Patricia Alegre

9. Future lssues in the Use ofHealth Status Assessment Measures in Clinica) Settings ...... 85 Sheldon Greenfield, Sherrie H. Kaplan, and Ira 8. Wilson

10. Quality ofLife at the End Stages ofLife 89 Daniel Callahan

COMMENTARIES

A. Quality of Life: Who Is Responsible?

Il. Quality of Life: The Experience of an Oncology Unit Functioning in a Rural Greek Area ...... 97 Vassilis Georgoulias, Charalaubos Kourousis, and Stelios Kakolyris

12. Advocacy for Patients with Cancer Quality ofLife Implications 101 Joan Marks

8. Quality of Life: Who Defines It?

13. Risk as Diagnosis: Implications for the Quality of Life ...... 107 Lisbeth Sachs

14. Quality of Life as a Major Determinant of Medical Decision-Making ...... 115 Robert Zittoun

C. Quality of Life at the End Stages of Life

15. Quality ofLife at the End Stages ofLife 119 Mohammed Bedjaoui

16. Cancer, AIDS, and Quality ofLife ...... 129 Robert N. Butler

17. Anguish and Suffering in the Face ofthe Hospital Organizational Pattern ...... 131 Jean-Miche1 Lassauniere

18. Living Well in the Shadow of Death 137 Joanne Lynn

D. Quality of Life: Socio-Economic, Geographic, and Cultural Factors

19. Quality of Life: Cultural, Socio-Economic, and Geographic Perspectives 141 Eka Esu-Williams Contents xiii

20. Quality of Life: Soc ia-Economic, Geographic, and Cultural Factors 147 Lieve Fransen

21. Quality of Life: An Unsuitable Case for Measurement? 155 Sonta M. Hunt

22. Quality of Life: Geographic and Cultural Differences ...... 159 John Orley

23. Cancer and Quality ofLife: Social and Community Stakes 163 Patrice Pinell

24. The HlV/AIDS Epidemie in Developing Countries: The Dilemma ofQuality of Life vs Quality of Care ...... 169 Ibrahim M. Shoaib

E. Quality of Life: Pharmaceutical Considerations

25. Quality of Life: Some Implications ofthe Advances in Human Genome Research 173 Paul A. Marks

26. Quality ofLife in Cancer and AIDS: An Industry Perspective 179 Stephen K. Carter

27. Quality of Life, Value, and Price in Medicines to Treat Serious Disease 183 Robert E. Cawthorn

Conclusion ...... 189 Harvey V. Fineberg

Index 193