 Recent Results in Cancer Research Managing Editors P. M. Schlag, Berlin · H.-J. Senn, St. Gallen Associate Editors P. Kleihues, Zürich · F. Stiefel, Lausanne B. Groner, Frankfurt · A. Wallgren, Göteborg Founding Editor P. Rentchnik, Geneva F. Stiefel (Ed.) Communication in Cancer Care With 6 Figures and 10 Tables 123 Prof. Friedrich Stiefel, MD Médecin Chef de Service Service de Psychiatrie de Liaison CHUV Rue du Bugnon 44 1011 Lausanne Switzerland Library of Congress Control Number: 2006920556 ISSN 0080-0015 ISBN 10 3-540-30757-5 Springer Berlin Heidelberg New York ISBN 13 978-3-540-30757-0 Springer Berlin Heidelberg New York This work is subject to copyright. All rights reserved, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broad- casting, reproduction on microfilm or in any other way, and storage in databanks. 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Editor: Dr. Ute Heilmann, Heidelberg Desk editor: Dörthe Mennecke-Bühler, Heidelberg Cover design: Frido Steinen Broo, eStudio Calamar, Spain Production & Typesetting: LE-TEX Jelonek, Schmidt & Vöckler GbR, Leipzig Printed on acid-free paper SPIN 11596073 5 4 3 2 1 0 To Fabienne, Axelle and Léa Foreword Communication as the Bridge to Hope and Healing in Cancer Care Cancer is often seen as precipitating an existen- specific to patients of all ages, diverse cultures tial crisis; a crisis of spirit and an opportunity and lifestyles. Perhaps two of the most well- for meaning. This is true not only for the patient developed areas in communication in cancer with cancer and his or her family and loved ones, care relate to shared decision-making research, but also, interestingly enough, for oncologists and the effectiveness of communication skills and cancer care providers. For the patient the training of cancer care providers. The field of challenges are dealing with fear and uncertainty, communication research and training is thus maintaining a balance between hope and de- quite broad and still in development, although spair, comprehending information and enacting much has been accomplished, as is illustrated in shared decision making, living with choices, and, this textbook. for too many, finding a way to accept death. For This text, Communication in Cancer Care the family the challenges are equally daunting; edited by F. Stiefel, represents one of the most finding a way to support their loved one and help comprehensive as well as clinically relevant ed- them maintain hope, advocate on their behalf, ited volumes on the subject of communication help collect and integrate information. This must in cancer care to appear to date. Professor Stiefel all be done while not allowing one’s own fear and has enlisted international experts in a very broad depression to produce a state of isolation for the range of cancer communication areas including: patient. For the oncologist and other cancer care cancer prevention, genetic counseling, all phases providers the challenges are fierce as well; find- of cancer treatment, palliative care, communica- ing a way to impart information clearly, finding tion with children, families, culturally specific a way to empower patients in a shared decision communications, interdisciplinary communica- making endeavor, finding a way to maintain tion and communication skills training. The table hope and most importantly somehow finding a of contents contains some interesting juxtaposi- way to prevent technology and modern science tions of chapters including a chapter on “Inform- from dehumanizing the doctor–patient relation- ing About Diagnosis, Relapse and Progression of ship. What we are learning, from this new and Disease – Communication with the Terminally rapidly evolving field of cancer communication Ill Cancer Patient” by Drs. Stiefel and Razavi, fol- research and training, is that good communica- lowed by a chapter on “Maintaining Hope: Com- tion in cancer care can be a bridge to hope and munication in Palliative Care” by Dr. Mary Lloyd healing. Williams. Communication issues in cancer care begin The contributors include an international even before a cancer diagnosis, in cancer array of experts in cancer communication and prevention strategies, and extend to all phases psycho-oncology. Contributors represent experts of treatment, survivorship and end-of-life care. from Switzerland, Belgium, England, France, Communication in cancer care involves the Germany, The Netherlands and Italy. This inter- patient and the family, as well as all the members national perspective is a testament not only to the of the cancer treatment team. Finally, commu- relevance of cancer communication throughout nication in cancer care must address issues all cultures, but also to the growing importance VIII and interest of the oncology and psycho-oncol- relevant with every passing moment. This text ogy communities in developing research and represents a major advance for the field of com- training in communication in cancer care. This munication in cancer care, and its publication is also represents the recognition that the delivery timely and well received. of optimal cancer care cannot take place without On a personal note, I am particularly gratified skillful, effective, and compassionate communi- that Prof. Stiefel has given me the opportunity to cation taking place. write a few words of introduction to the text he As we face the future of cancer care, it is clear so skillfully created and edited. Our professional that we are in store for more advances in tech- relationship and personal friendship dates back nology, diagnostics and treatment that have the almost 20years, to the period of time that Prof. potential to create an even greater detachment Stiefel and I conducted our first research studies between the patient and the cancer care provider. together at Memorial Sloan-Kettering Cancer The potential for further de-humanizing or de- Center. It gives me great pleasure to congratulate personalizing the practice of oncology is readily him on this extraordinary contribution to the evident. Thus the importance of communication fields of Psycho-oncology and Cancer Commu- in cancer care grows greater and more critically nication. William Breitbart, MD, FAPM Professor and Chief, Psychiatry Service Memorial Sloan-Kettering Cancer Center New York, NY, USA Contents 1 KeyElementsofCommunicationinCancerCare .......................... 1 E. Maex, C. De Valck 2 MotivatingforCancerPrevention ......................................... 7 J. Cornuz, R. Bize 3 CommunicationinGeneticCounsellingforBreast/OvarianCancer ..... 23 S. Dolbeault, C. Flahault, D. Stoppa-Lyonnet, A. Brédart 4 InformingAboutDiagnosis,RelapseandProgressionofDisease– CommunicationwiththeTerminallyIllCancerPatient .................. 37 F. Stiefel, D. Razavi 5 MaintainingHope:CommunicationinPalliativeCare ................... 47 V. Kennedy, M. Lloyd-Williams 6 PatientsandTheirFamilies ............................................... 61 P. Firth 7 ChildrenwithCancer ...................................................... 73 M.A. Grootenhuis, B.F. Last 8 InterdisciplinaryCommunication ........................................ 81 F. Porchet 9 CulturalAspectsofCommunicationinCancerCare ...................... 91 A. Surbone X 10 CurrentConceptsofCommunicationSkillsTraininginOncology ..... 105 L. Fallowfield, V. Jenkins 11 CommunicationSkillsTraininginOncology:ItWorks! ................ 113 F. Stiefel, N. Favre, J.N. Despland 12 CommunicationandCommunicationSkillsTraininginOncology: OpenQuestionsandFutureTasks ...................................... 121 A. Kiss, W. Söllner List of Contributors Raphaël Bize, MD Sylvie Dolbeault, MD Institute for Social and Preventive Medicine Psycho-Oncology Unit Lausanne University Hospital Institut Curie rue du Bugnon 44 26, rue d’Ulm 1011 Lausanne 75248 Paris Cedex 05 Switzerland France Anne Brédart, PhD Lesley Fallowfield, Prof., MD Psycho-Oncology Unit Cancer Research UK Institut Curie Psychosocial Oncology Group 26, rue d’Ulm Brighton & Sussex Medical School 75246 Paris cedex 05 University of Sussex France Falmer, Brighton East Sussex, BN1 9QG Jacques Cornuz, Prof., MD, MPH UK Department of Internal Medicine/ Institute of Social and Preventive Medicine Nathalie Favre Lausanne University Hospital Psychiatry Service rue du Bugnon 44 Lausanne University Hospital 1011 Lausanne rue du Bugnon 44 Switzerland 1011 Lausanne Switzerland Jean-Nicolas Despland, Prof., MD Psychotherapy Research Unit Pam Firth, RN Department of Psychiatry Head of Family Support Lausanne University Hospital Isabel Hospice rue du Bugnon 44 Watchmead 1011 Lausanne Welwyn Garden City AL7 1LT Switzerland UK Chris De Valck, PhD Cécile Flahault University of Hasselt Psycho-Oncology Unit Faculty of Medicine Institut Curie Limburg University Centre 26, rue d’Ulm Universiteitslaan 75248 Paris Cedex 05 3590 Diepenbeek France Belgium