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A Cross-National Study of Dutch and Australian GOOD LIFE IN THE BALANCE: A CROSS-NATIONAL STUDY OF DUTCH AND AUSTRALIAN DISABILITY PERSPECTIVES ON EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE. Erik A. Leipoldt Student Number: 0863071 A thesis submitted in fulfilment of the requirements for the award of Doctor of Philosophy (Human Services) at the Faculty of Community Studies, Education and Social Science Edith Cowan University May, 2003 Principal Supervisor Dr. Alan Tapper ABSTRACT This is a cross-national qualitative study with the purpose of obtaining perspectives held by people with quadriplegia and leading figures in disability movements in the Netherlands and Australia on the issues of euthanasia and physician-assisted suicide (EPAS). A disability voice is not prominent in public debate on EPAS in Australia or the Netherlands, even though people with disabilities are often thought to be vulnerable in relation to EPAS policies. Disability perspectives are potentially valuable in illuminating issues in relation to euthanasia and physician-assisted suicide, because issues of dependence, independence, and individual autonomy play important roles in relation to both EPAS and to living with disability. The study’s methodology uses a phenomenological approach and incorporates aspects of heuristics and grounded theory. Its conceptual framework incorporates MacIntyre’s (1999) theory of acknowledged dependency and vulnerability; Habermas’ (1989) theory of knowledge; and Festinger’s (1959) theory of cognitive dissonance. The main sample of twenty people with quadriplegia (the grassroots sample) was interviewed in the Netherlands and in Australia. Additionally, four leading figures (the leaders sample) in disability movements in each country were interviewed, a total of 28 informants. Informants were recruited by means of referral from organisations and snow-balling techniques. In-depth, semi- structured interviews and an inductive data analysis, based on Colaizzi (1978), were used. The main finding was that grassroots informants hold views on EPAS similar to those of mainstream public opinion. No substantial difference was found between countries but there was some difference between the responses of the grassroots and leader samples. The grassroots informants’ views on EPAS were characterised by a value system that used the socially dominant value of ‘individual autonomy’. These views were largely not based on personal experience. Additionally, informants did not appear to be well-informed on issues pertinent to EPAS. The study also found ii that the informants’ disability experience was characterised by an opposing value system, that of interdependence. In the interdependence framework informants experienced wellbeing and outgrew fundamental issues of human suffering. In the individual autonomy framework such issues were referred to an individual’s right to choose to have EPAS. Informants felt little cognitive dissonance about this apparent difference between their views on EPAS and their experience of suffering, even though suffering is common to the experience of living with quadriplegia and to individuals’ motivations in desiring EPAS. The significance of this low cognitive dissonance in relation to the informants’ views on EPAS was explained using the study’s conceptual framework. Various factors may play a role in preventing the informants from using their private interdependence values in the way they conceptualise their views on the public policy issue of EPAS. iii DECLARATION I certify that this thesis does not, to the best of my knowledge and belief: (i) incorporate without acknowledgement any material previously submitted for a degree or diploma in any institution of higher education; (ii) contain any material previously published or written by another person except where due reference is made in the text; or (iii) contain any defamatory material Signed: ……………………………. Date: …………………………….. iv ACKNOWLEDGEMENTS Firstly, it is not possible to give enough thanks to my wife June, without whose unfailingly loving, practical and emotional support this work would certainly have faltered. Indeed, it may never have been undertaken at all. I am grateful to her. My children, Nolan and Sophie have also of course been affected by my study. They have been, sometimes totally unexpectedly, so refreshingly helpful and inspiring in their own ways. I owe them much too. My supervisors have truly represented a guide and stimulus towards the best that I could produce and tried to steer me away from reefs and sheer cliffs. If any navigation errors are still evident they are of course entirely mine. I greatly appreciate their help but none so as much my Senior Supervisor Dr. Alan Tapper‘s level of critique and assistance. His collegial approach, as that of Associate Supervisors Dr. Bob Jackson and Dr. Christopher Newell, was of great help. Dr. Judy Cockram has been very generous in giving her time and independent advice on several occasions throughout this study. Dr. Jan Gray provided valuable advice on the themes and categories that emerged from the interview transcripts. I am grateful to them all. I am of course very thankful for the honesty and willingness of my informants to give so much personal and thoughtful detail about their lives and views on the complex, sometimes emotional, issues that participation may have raised for them. I don’t underestimate the value of their contribution and thank them for it. A number of people made themselves available to discuss aspects of the study with me or to obtain insight in wider contexts such as of palliative care, euthanasia and disability policy and international aspects of ethics of the study. I sincerely thank Dr. Kevin Yuen, Dr. Ben Zylics, Prof. Hans Reinders, Jeroen Zomerplaag, Prof. Linda Kristjanson, Prof. Evert van Leeuwen, Dr. Arko Oderwald at the Vrije Universiteit at Amsterdam and Dr. James Kennedy. I am grateful for some financial support from Edith Cowan University in recognition of disability-related costs of this research. Special thanks to the Western v Australian Silver Chain Nursing Association, my wonderful parents, Frits and Riet, and Dutch great-aunt Stien, and friends Jeremy Ward, Kevin Cocks, as well as Graham Law, Dr Philip Deschamp and others who voluntarily and practically supported this study in different ways. Thanks also to the always reliable transcriber Norma Stewart. vi TABLE OF CONTENTS ABSTRACT........................................................................................................ii DECLARATION ...............................................................................................iv ACKNOWLEDGEMENT ..................................................................................v TABLE OF CONTENTS..................................................................................vii LIST OF FIGURES .............................................................................................. CHAPTER ONE: INTRODUCTION .............................................................1 1.1 BACKGROUND TO THE STUDY.....................................................1 1.1.1 A NOTE ON DISABILITY TERMINOLOGY ...................................1 1.1.2 THE NETHERLANDS AND AUSTRALIA .......................................2 1.1.3 EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE................2 1.1.4 THE DUTCH CONTEXT ....................................................................6 1.1.5 EPAS IN PRACTICE ...........................................................................9 1.1.6 THE AUSTRALIAN CONTEXT.......................................................13 1.1.7 PUBLIC SUPPORT FOR EPAS ........................................................15 1.1.8 SUMMARY........................................................................................18 1.1.9 THE SOCIAL POSITION OF PEOPLE WITH DISABILITIES AND EPAS .........................................................................................19 1.1.10 DISABILITY AND EPAS..................................................................22 1.1.11 SUMMARY........................................................................................24 1.1.12 PEOPLE WITH QUADRIPLEGIA....................................................25 1.1.13 SUMMARY........................................................................................26 1.2 DEFINITIONAL APPROACHES......................................................27 1.2.1 EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE..............27 vii 1.2.2 PALLIATIVE CARE..........................................................................29 1.3 MY PERSONAL BACKGROUND ...................................................30 1.4 SIGNIFICANCE OF THE STUDY....................................................31 1.4.1 A MARGINAL VOICE......................................................................32 1.4.2 A CONTRIBUTION FROM DISABILITY PERSPECTIVE............33 1.4.3 CRITICAL KNOWLEDGE FROM THE PERSPECTIVES OF DEVALUED PEOPLE .......................................................................35 1.5.0 PURPOSE OF THE STUDY..............................................................36 1.5.1 RESEARCH OBJECTIVE .................................................................36 1.5.2 RESEARCH QUESTIONS ................................................................37 CHAPTER TWO: LITERATURE REVIEW..............................................38 2.1 DISABILITY, EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE.............................................................................................38 2.1.1 SUMMARY........................................................................................48
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