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Resource Allocation for Solid Organ Transplantation

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Resource Allocation for Solid Organ Transplantation RESOURCE ALLOCATION FOR SOLID ORGAN TRANSPLANTATION: TOWARD PUBLIC AND HEALTH CARE PROVIDER DIALOGUE by ROSALIE CATHERINE STARZOMSKI BN, Dalhousie University, 1978 MN, University of Calgary, 1984 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES SCHOOL OF NURSING We accept this thesis as conforming to the^required^standard THE UNIVERSITY OF BRITISH COLUMBIA April 1997 © Rosalie Catherine Starzomski, 1997 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada Date DE-6 (2/88) ii ABSTRACT In examining methods to facilitate debate about resource allocation for health care, this qualitative study, using constructivist methods, was designed to: 1) describe attitudes, beliefs, values and moral reasoning processes used by stakeholder groups when discussing ethical issues related to resource allocation for solid organ transplantation; and 2) describe how these groups envisioned their role, and roles of other groups, in allocation of resources. Thirty-four consumer and health care provider groups (188 participants), were purposively selected from those with a major, moderate and minor stake in the development of transplantation. Data were collected through focus group interviews, with stimulus material (a case about transplantation) used in the discussion. Three moral reasoning processes emerged as participants reasoned about ethical concerns related to resource allocation. These included "deliberative," "examined emotion," and "emotional" reasoning processes. The processes were used by all groups at different times. The process used was dependent on the context of the problem, and influenced by the participant's views about transplantation. Integrated justice and care based approaches emerged when reasoning about the ethical problems. Participants differed in applying the values and principles identified during the discussion. In particular, different theoretical perspectives of justice were used. Moral reasoning ability did not appear to be associated with education, gender or membership in a group. Three patterns of viewing transplantation were identified: "through a glass brightly" (positively), "through a glass translucently" (ambivalently), and "through a glass darkly" (negatively). These were constructed from a synthesis of values, beliefs and attitudes held about transplantation, and were dependent on factors such as personal experience, culture, ethnicity, religion, family upbringing, relationships, work context, and actual experience with transplantation. Participants supported the idea of including multiple voices in the debate about resource allocation at the macro level of the system. Consumers expressed this as an opportunity to have input into decisions, but not necessarily make them. There was support to have consumers involved in meso level decision making, including being part of boards and selection committees. Collecting data using focus groups was a way of opening up moral space for discussions about resource allocation. V TABLE OF CONTENTS Abstract Table of Contents Acknowledgment Dedication Chapter One BACKGROUND CONTEXT TO THE PROBLEM Solid Organ Transplantation - A Resource Allocation Microcosm Health Care Reform - Context for Resource Allocation in Transplantation Involvement of Consumer and Health Care Provider Stakeholders in Resource Allocation The Research Problem Purpose and Research Questions Significance Chapter Two LITERATURE REVIEW Resource Allocation for Organ Transplantation Theories of Justice Consumer Participation in Health Care Decision Making Moral Theory Moral Reasoning and Collaboration of Stakeholder Groups Chapter Three METHODS Constructivist Inquiry Data Collection Participants Data Analysis Trustworthiness Assumptions Limitations Ethical Considerations Dissemination of the Study Constructions Chapter Four - CONSTRUCTIONS-THE DIALOGUE AND THE MEANING WITHIN IT The Focus Group Process iv TABLE OF CONTENTS (cont.) Interpreting Moral Problems 84 Patterns of Viewing Organ Transplantation 84 Viewing transplantation as through a glass brightly 85 Viewing transplantation as through a glass translucently 89 Viewing transplantation as through a glass darkly 92 Similarities and Differences within and between Stakeholder Groups about their Views Regarding Organ Transplantation 93 Influences on the Views of Focus Group Participants 108 Moral Reasoning Processes 110 Similarities and Differences in Identifying Moral Problems 117 Similarities and Differences in Developing Possible Courses of Action and Making Moral Choices 119 Public and Provider Involvement in Making Decisions about Resource Allocation for Solid Organ Transplantation 128 Summary 132 CHAPTER FIVE - THE SEARCH FOR COMMON MORAL GROUND 134 Moral Reasoning Processes 135 Integrating Moral Perspectives - Moral Reasoning in Context 139 Identifying Moral Problems 146 Views about Organ Transplantation 151 Organ Donation 152 Consumer Views about Organ Donation 152 Health Care Provider Views about Organ Donation 154 Living Donation 156 Presumed Consent 156 Xenografting 158 Buying and Selling Organs 159 Public and Health Care Provider Involvement in Decisions about Allocation of Resources 160 Macro Level of the Health Care System 160 Meso and Micro Level of the Health Care System 162 Focus Groups as a Method for Opening up Moral Space 164 Summary 166 CHAPTER SIX - PUBLIC AND HEALTH CARE PROVIDER DIALOGUE - TOWARD NEW HORIZONS Summary and Conclusions 168 Implications and Recommendations 172 Implications for Public Policy 172 Public participation 172 Dialogue about ethical issues 173 Transplantation/organ donation issues 173 V TABLE OF CONTENTS (cont.) Implications for Practice 175 Collaboration 175 Institutional systems for organ donation 175 Implications for Education 176 Collaboration-partnerships and discourse 176 Ethics education 176 Implications for Research 177 Moral reasoning 177 Resource allocation 177 Transplantation and organ donation 178 REFERENCES 180 APPENDICES Appendix 1 Glossary of Terms 211 Appendix 2 Transplant Statistics 214 Appendix 3 Flow of Naturalistic Inquiry 216 Appendix 4 Case / Questions 217 Appendix 5 Ethical Decision Making Framework 220 Appendix 6 Chronology of Events 222 Appendix 7 Focus Groups 225 Appendix 8 Age Range of Participants 226 Appendix 9 Education Level of Participants 227 Appendix 10 Religious Mfiliation 228 Appendix 11 Organ Donors - Health Care Providers 229 Appendix 12 Organ Donors - Consumers 230 Appendix 13 Total Household Income 231 Appendix 14 Occupations 232 Appendix 15 Occupations 233 Appendix 16 Consent Form 234 vi ACKNOWLEDGMENT This research would not have been possible without the tremendous interest and commitment of all the participants in this study who shared their thoughts, experiences, ideas and beliefs with honesty, sincerity and humor. I thank them for their wonderful participation. It has been a privilege to be part of this journey with them. It would also not have been possible for this project to have been completed without the support, caring, wisdom and assistance of my family, friends and colleagues. I wish to extend my most heartfelt thanks to my friends; Philippa, who went "above and beyond," to read drafts, provide ongoing critiques, and most of all, with her wit and humor, was always just a phone call away; and to Maureen, who, even when she lived at the other side of the country "walked" with me when she knew I needed the company; and to Marcia, Beryl, Peter, Judy, Patricia, Barbara, Jacky and Sheila, who offered helpful suggestions, provided support (and dinners!) and kept me connected as this study evolved. I thank my PhD colleagues, particularly Paddy Rodney, who have enriched my work, challenged my thinking, and have been an ongoing delight to work with, and look forward with great anticipation to our future work together. I also thank my colleagues at the University of Victoria, for believing in me, and giving me the "space" to make this study become a reality. A very special thank you to my dissertation committee members, Drs. Ann Hilton, Bert Cameron, Michael McDonald, and Sally Thorne. They kept me focused, and provided tremendous support and wisdom, stretching my thiiudng'in ways I had never anticipated, and encouraging me to walk "where there was no path and leave a trail." And to Faye Bebb, my heartfelt thanks for being the most patient, hardworking, and committed research assistant with whom anyone could work. I am grateful to the Kidney Foundation of Canada and the National Health Research Development Program for their support and confidence in my work. Thanks also to B.C. Branch staff members, Chloe Lapp and Kelly Weilbacher for their assistance and understanding as I rescheduled meetings and commitments as I completed this work; and to the Nephrology program staff, and Ethics Committee members at Vancouver General Hospital who provided me with good wishes and encouragement throughout my doctoral studies. Finally, my love and thanks go to my family - - my
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