Justice & Solidarity in Priority Setting in Healthcare

JUSTICE & SOLIDARITY IN PRIORITY SETTING IN HEALTH CARE p. 1 JUSTICE & SOLIDARITY IN PRIORITY SETTING IN HEALTHCARE IDENTIFYING AND DISCUSSING THE ETHICAL AND SOCIETAL ISSUES IN RESOURCE ALLOCATION p. 2 JUSTICE & SOLIDARITY IN PRIORITY SETTING IN HEALTH CARE COLOPHON Justice and solidarity in priority setting in healthcare. Identifying and discussing the ethical and societal issues in resource allocation A joint publication of the King Baudouin Foundation and the Belgian Advisory Committee on Bioethics WRITERS AND EDITORS Lieven Annemans, Marc Bogaert, Yvonne Denier, Alain Denis, Ignaas Devisch, Felix Gurtner, Bjørn Hofmann, Richard Huxtable, Faraz Kermani, Frits Lekkerkerker, Christian Léonard, Joël Ménard, Mireille Merckx, Raf Mertens, Barbara Prainsack, Lise Rochaix, Karin Rondia, Harald Schmidt, Jochen Vollmann All contributors to the report are listed in Appendix 3. The report is the result of a workshop that took place in Brussels in December 2012. The Foundation gratefully acknowledges the stimulus received from all participants. FINAL EDITING Steve Judd and Dianna Rienstra COORDINATION KING BAUDOUIN FOUNDATION Brigitte Duvieusart, Pascale Prête, Gerrit Rauws, Tinne Vandensande BELGIAN ADVISORY COMMITTEE ON BIOETHICS Marc Bogaert, Yvonne Denier, Paul Schotsmans, Veerle Weltens GRAPHIC CONCEPT & LAYOUT Kaligram COVER ILLUSTRATION Jürgen Ovens (1623-1678), Justice Download this publication free of charge from www.kbs-frb.be Legal deposit: D/2893/2013/10 ISBN-13: 978-90-5130-810-5 EAN: 978-90-5130-8 ORDER NUMBER: 3142 June 2013 With the support of the Belgian National Lottery JUSTICE & SOLIDARITY IN PRIORITY SETTING IN HEALTH CARE p. 3 TABLE OF CONTENTS Foreword Gerrit Rauws ................................................................................................5 Introduction Paul Schotsmans........................................................................................................ 6 1 Reconciling evidence, excellence, effectiveness and emotions? – Raf Mertens ................................9 2 Taking solidarity seriously – can it help? – Barbara Prainsack ................................................. 21 3 Ten case studies - A springboard for discussion ............................................................ 31 Case 1 – Cancer treatment for patients with low life expectancy ........................................... 32 Zytiga and treating prostate cancer – Faraz Kermani Case 2 – Expensive and innovative treatments for rare diseases ........................................... 36 Myozyme and the treatment of Pompe’s disease – Frits Lekkerkerker Case 3 – Interventions for personal convenience:........................................................... 40 The case of growth hormone treatment for non-deficient children – Lise Rochaix Case 4 – Contraception for young girls A complex issue – Mireille Merckx ............................................................................ 44 Case 5 – Individual responsibility and lifestyle ............................................................. 47 Incentive programmes for losing weight – Harald Schmidt Case 6 – Medication when lifestyle change is an option .................................................... 52 Reflection on the use of statins for primary prevention of cardiovascular diseases – Christian Léonard Case 7 – Futile diagnostic tests ............................................................................. 56 Excessive use of X-ray imaging – Bjørn Hofmann Case 8 – Interventions at the boundaries of healthcare .................................................... 60 The case of psychotherapy – Felix Gurtner Case 9 – Expensive treatments with limited effectiveness .................................................. 64 The case of medications for Alzheimer’s disease- Joël Ménard Case 10 – Transition from therapeutic to palliative care The ethics of a decision to limit life-prolonging treatment – Richard Huxtable.................................. 68 p. 4 JUSTICE & SOLIDARITY IN PRIORITY SETTING IN HEALTH CARE 4 Personalized medicine and priority setting in future European healthcare – Jochen Vollmann.............. 75 5 A review of the societal and ethical issues – Marc Bogaert, Yvonne Denier, Ignaas Devisch, Karin Rondia ........ 87 European healthcare systems – core values ................................................................ 89 Solidarity Justice Responsibility Societal developments ....................................................................................105 Growing individualism, wish-fulfilling medicine and well-being Enhancement and technological push: from fate to risk management Preventive and predictive medicine Autonomy and shared decision-making Major challenges to current healthcare system............................................................115 The growing impact of lifestyle diseases Medicalization Financial issues 6 Lessons learned – Lieven Annemans, Marc Bogaert, Yvonne Denier, Alain Denis ................................127 Developing a conceptual framework Values and objectives Criteria Structures and processes Stakeholders Enablers and inhibitors Which way forward? ...............................................................................................159 Appendices 1. Glossary of terms .........................................................................................157 2. Programme of the workshop ..............................................................................159 3. Contributors – Biografical Information.....................................................................162 4. Composition of the KBF Advisory Committee . 168 5. Partners ..................................................................................................169 JUSTICE & SOLIDARITY IN PRIORITY SETTING IN HEALTH CARE p. 5 FOREWORD This publication is the result of a European workshop held in December 2012 in Brussels, as a joint initiative of the King Baudouin Foundation and the Belgian Advisory Committee on Bioethics. We brought together a diverse group of 30 ex- perts, coming from a variety of backgrounds and with different perspectives, for a very intensive two-day programme. All participants1 were invited to identify and discuss the societal and ethical values at stake in healthcare reimbursement decision making, starting from the current reality and specifically using exemplary cases that are on the agenda in several countries in Europe. This mapping and framing workshop is the first step in an ambitious project aiming to explore ways in which these decisions can be made more consistent with ethical reasoning and societal preferences. The rationale of this project is as follows: one of the models that define the objectives of a good healthcare system refers to accessibility, sustainability and quality. Increasing tensions exist between these three areas, as both healthcare needs and new technologies exceed affordable supply in Western healthcare systems. As a result, resource allocation decisions are inevitable. This raises two issues. The first is the willingness to pay for this system given that we are currently in an economic crisis. The second is distributive justice, or the distribution of resources within the system. These are a few of the criteria that are often used to evaluate decision-making mechanisms in the healthcare system. Our starting point is that the social and ethical aspects of medical and technological innovation should be discussed just as seriously as the scientific, technical and economic aspects. Decision-making processes within the health system should be sufficiently robust to deal with all of these aspects and dimensions. Individuals can then question whether this is the case in the current system in their countries. The central question facing this project is: How can we better integrate social values and preferences in current healthcare reimbursement decision-making? We are not calling for the construction of a completely new system. We are not utopians. A more operational question would be: How can we integrate new tools, new actors or new tasks within existing policy frameworks in Belgium or elsewhere? The main geographical focus of this project is Belgium, but similar questions and challenges arise in most European countries. As a result, we decided to open the discussion to what is taking place in neighbouring countries. We hope that this publication will be of use for those reflecting on these issues and help them to gain a deeper understanding of what is at stake. During the workshop 10 case studies were introduced and discussed, three keynote contributions were presented and four discussion panels were conducted.2 The participants covered issues related to both substance and governance. This publication is intended to offer insight into these issues. This is an ongoing process and we will be continuing to share new insights and improvements in practice. Gerrit Rauws Director of the Health Programme King Baudouin Foundation 1 For information on participants, see Appendix 3. 2 Appendix 2 contains the programme of the workshop. p. 6 JUSTICE & SOLIDARITY IN PRIORITY SETTING IN HEALTH CARE INTRODUCTION The Board of the Belgian Advisory Committee on Bioethics enthusiastically accepted the invitation to collaborate with the King Baudouin Foundation on this project. The Belgian Committee receives numerous requests for opinions on justice and solidarity in the Belgian healthcare system. Having issued a very wide-ranging opinion in the First Mandate

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