U.K. SOCIAL WORKERS' ATTITUDES TOWARD ASSISTED DEATH, POLICIES GUIDING PRACTICE, AND TRANSFORMATIONAL COLLABORATION: HOLDING FAST TO MEDICO-ETHICAL PRINCIPLES OF BENEFICENCE, NON- MALFEASANCE AND SOCIAL JUSTICE Michael G. Young M.A., Simon Fraser University, 1994 THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY Under Special Arrangements in the Faculty of Arts & Social Sciences O Michael G. Young 2006 Simon Fraser University Summer, 2006 All rights reserved. This work may not be reproduced in whole or part, by photocopy or other means, without permission of the author. APPROVAL Name: Michael G. Young Degree: Doctor of Philosophy Title of Thesis: U.K. Social Workers' Attitudes toward Assisted Death, Policies Guiding Practice, and Transformational Collaboration: Holding Fast to Medico-ethical Principles of Beneficence, on-malfeasance and Social Justice Examining Committee: Trude Heift, Chair Brian Burtch, Senior Supervisor Professor, Criminology Margaret A. Jackson, Supervisor Professor, Criminology Barry Beyerstein, Supervisor Professor, Psychology David MacAlister, LL.M., Examiner Assistant Professor, Criminology Michael Cormack, LL.B., External Examiner Associate Attorney, Paul, Hastings, Janofsky & Walker LLP New York City Date Approved: SIMON FRASER U N I W R S ~b~ Ir ary DECLARATION OF PARTIAL COPYRIGHT LICENCE The author, whose copyright is declared on the title page of this work, has granted to Simon Fraser University the right to lend this thesis, project or extended essay to users of the Simon Fraser University Library, and to make partial or single copies only for such users or in response to a request from the library of any other university, or other educational institution, on its own behalf or for one of its users. The author has further granted permission to Simon Fraser University to keep or make a digital copy for use in its circulating collection, and, without changing the content, to translate the thesislproject or extended essays, if technically possible, to any medium or format for the purpose of preservation of the digital work. The author has further agreed that permission for multiple copying of this work for scholarly purposes may be granted by either the author or the Dean of Graduate Studies. It is understood that copying or publication of this work for financial gain shall not be allowed without the author's written permission. Permission for public performance, or limited permission for private scholarly use, of any multimedia materials forming part of this work, may have been granted by the author. This information may be found on the separately catalogued multimedia material and in the signed Partial Copyright Licence. The original Partial Copyright Licence attesting to these terms, and signed by this author, may be found in the original bound copy of this work, retained in the Simon Fraser University Archive. Simon Fraser University Library Burnaby, BC, Canada SIMON FRASER ' UNWERSI~bI rary STATEMENT OF ETHICS APPROVAL The author, whose name appears on the title page of this work, has obtained, for the research described in this work, either: (a) Human research ethics approval from the Simon Fraser University Office of Research Ethics, (b) Advance approval of the animal care protocol from the University Animal Care Committee of Simon Fraser University; or has conducted the research (c) as a co-investigator, in a research project approved in advance, (d) as a member of a course approved in advance for minimal risk human research, by the Office of Research Ethics. A copy of the approval letter has been filed at the Theses Office of the University Library at the time of submission of this thesis or project. The original application for approval and letter of approval are filed with the relevant offices. Inquiries may be directed to those authorities. Simon Fraser University Library Burnaby, BC, Canada Abstract Social workers play a key, but unacknowledged role regarding end-of-life decisions. The dearth of research on social workers' attitudes toward assisted death is in stark contrast to the abundance of research on assisted death involving health care practitioners. Through analysis of data collected on members of the British Association of Social Workers (BASW) in 1998, this research examines attitudes of social workers toward assisted death (AD) including both voluntary euthanasia (VE) and assisted suicide (AS). Several hypotheses are developed from the available literature on assisted death involving social work and medical practice. The quantitative data are supplemented with written responses by BASW members. There is variation between social workers' support of AD by country. English social workers are the most supportive, followed by Scottish, Welsh and Northern Ireland social workers. As a group, social workers support legalizing VE (72%) and AS (72.5%). A majority of social workers (69%) endorsed the Dutch model of legalized euthanasia. A minority of social workers (25%) indicated that they would report a colleague they suspected was involved in an assisted death. Catholics were less supportive of legalizing assisted death and the Dutch model of euthanasia but, regardless of religion, most social workers respect their clients' wishes regarding end-of-life choices. Although less than 50% of social workers want to be involved in the decision-making making process with clients, over 65% indicated a willingness to engage in policy development regarding assisted death. Given their position, policy development is essential for social workers to be effective in end-of-life care. The theoretical perspective guiding the research shows that social workers support medico-ethical principles of autonomy, beneficence, non- malfeasance and social justice in assisted death. This finding places social workers in an important position regarding care of the dying. Future research should include the development and test of a collaborative model of training for all practitioners working with those facing end-of-life decisions. As a profession, social work must prepare itself for the challenges posed by growing populations of persons facing end-of-life decisions. Key words: Social work, attitudes, assisted death, euthanasia, assisted suicide, beneficence, non-malfeasance, medico-ethical, transformational collaboration, social justice. Acknowledgements First and foremost, I would like to thank my supervisor, Dr. Brian Burtch for his encouragement to complete this project. His timely feedback and thoughtful critique were invaluable in the writing process. The insights of Dr. Margaret Jackson and Dr. Barry Beyerstein were also important in getting the dissertation to completion, and I thank them for their efforts and support. Professor David MacAlister's comments on the draft were most helpful and important to the substance of the dissertation. I would also like to thank Mr. Michael Cormack, the external examiner, for his diligent critique and suggestions regarding revisions to the manuscript. Dr. Trude Heift's efforts in chairing the dissertation defence and in providing guidance as Acting Dean of Graduate Studies are also greatly appreciated. I am grateful to all of the committee for their thought-provoking questions and suggestions on a potentially volatile and sensitive topic during the defence. As well, Vivian Blaker's administrative assistance leading up to and during the defence was most appreciated. The completion of this dissertation would not have been possible if it were not for my colleague, Russel Ogden, who initiated the BASW (British Association of Social Workers) project and provided detailed suggestions prior to the thesis defence. I would also like to thank my family and friends who supported me throughout my studies in graduate school. Finally, I am grateful to BASW and the members who took the time to complete the original survey. It is my hope that this project positively contributes to future debate on the role of social workers regarding end-of-life issues. Table of Contents .. Approval .................................................................................................................................................... 11 ... Abstract .........................................................................................................................................................1 11 Acknowledgements ..................................................................................................................................... v Table of Contents ...................................................................................................................................... vi ... List of Tables. .............................................................................................................................................. vl11 List of Figures ............................................................................................................................................... ix Chapter 1. .......................................................................................................................................................1 Introduction to Assisted Death ................................................................................................................1 The Problem: The Unacknowledged Role of Social Workers. ............................................................. 6 Definition of Key Concepts ................................................................................................................ 10 Organization of the Dissertation ....................................................................................................... 12 Notes ................................................................................................................................................. 17 Chapter 2 .................................................................................................................................................... 18 The End of Life is Immanent: Teleological Theories and the Debate on Assisted Death. ................ 18 Theoretical Orientation: Medico-ethical Principles ........................................................................... 18 The Debate on Assisted death ............................................................................................................ 21 The Emergence of Self-Determination ............................................................................................. 24 The Right to Die ................................................................................................................................. 25 Religious Views .............................................................................................................................. 27 The Slippery Slope: From Individual Choice to and Epidemic of Hastened Deaths ........................... 29 The "Common" Good .................................................................................................................... 33 The Legal Status of Assisted Death .................................................................................................. 35 Cross-National Developments in Assisted Death ................................................................................ 38 Assisted Death in Canada: Constitutional and Legal Challenges ........................................................ 38 From Dr . Death to Dying with Dignity: Assisted Death in the United States ..................................... 41 The Role of Parliamentary Supremacy: Assisted Death in Australia .................................................. 44 From Acceptance to legalization: Assisted Death in the Netherlands ............................................... 47 Following the Dutch: Assisted Death in Belgium ............................................................................. 52 Assisted Death in the United Kingdom: Hypocrisy in Law? .............................................................. 54 Medical Heg.e mony and Assisted Death ........................................................................................ 60 Notes ................................................................................................................................................... 65 Chapter 3 ..................................................................................................................................................... 67 Professional and Public Attitudes Toward Assisted Death ................................................................6 7 Social Workers' Attitudes ............................................................................................................. 67 Medical Practitioners and Support for Assisted Death ..................................................................... 76 Medical Practitioners' Support in Principle of Assisted Death ........................................................... 77 Medical Practitioners' Support for Legalized Assisted Death .......................................................... 80 Changing Public Attitudes on Assisted Death ..................................................................................... 89 Summary: Tacit Support for Assisted Death? ..................................................................................... 90 Chapter 4 ...................................................................................................................................................... 93 Triangulation of Survey and Qualitative Data .................................................................................... 93 Secondary Data Analysis .................................................................................................................... 94 Advantages of Secondary Data Analysis ............................................................................................ 95 Limitations of Secondary Data Analysis ............................................................................................ 97 Secondary Analysis of Social Workers' Attitudes Toward Assisted Death ........................................ 99 Data Source. Sample And Measurements ........................................................................................ 101 Data Analysis ............................................................................................................................... 105 Frequency Distributions and Descriptive Statistics. .......................................................................... 106 Notes .............................................................................................................................................. 116 Chapter 5 .................................................................................................................................................. 117 Social Worker Support of Assisted Death ......................................................................................... 117 Support for Assisted Death and Country ....................................................................................... 118 Practice Setting and Legal Aspects ................................................................................................... 124 Practice Setting and Support for the Dutch Model ............................................................................ 125 Practice Setting and the Decision to Report ...................................................................................... 127 Summary: Support for Assisted Death and Practice Setting ............................................................. 129 Bio-medical Dominance of Assisted death ...................................................................................... 136 Bio-medical Dominance and Social Worker Involvement in Policy Development .......................... 136 Bio-medical Dominance and Social Worker Involvement in Discussions ........................................ 140 Summary: Bio-medical Dominance of Assisted Death .................................................................... 142 Assisted Death and Self-realization .................................................................................................. 148 Social Workers' Belief that Self-realization Extends to Assisted Death ........................................... 148 Religious Beliefs and Support for Assisted Death ........................................................................... 150 Summary: Assisted Death and Self-realization ............................................................................... 152 Assisted death and Experience .......................................................................................................... 160 Personal Experience and Assisted Death .......................................................................................... 160 Being Consulted Regarding Assisted Death ................................................................................... 164 Summary: Assisted Death and Experience. ..................................................................................... 165 The Effect of Relationships on Social Workers' Attitudes Toward Assisted Death ......................... 171 Summary: The Effect of Relationships on Social Workers' Attitudes Toward Assisted Death ........ 175 Chapter 6 .................................................................................................................................................. 178 Social Work and the Right to Die with Dignity ................................................................................. 178 Limitations .................................................................................................................................. 189 Future Research ................................................................................................................................. 190 Works Cited ............................................................................................................................................... 195 Appendix A ................................................................................................................................................ 211 Euthanasia and Assisted Suicide Survey Questionnaire. ................................................................... 211 Appendix B ................................................................................................................................................ 216 Informed Consent Letter ................................................................................................................... 216 Appendix C ................................................................................................................................................ 217 Non-Response Card ....................................................................................................................... 217 vii List of Tables Table 2.1 Assisted deaths as a Percentage of all Deaths in the Netherlands According to Death Certificate ....... 3 1 Table 2.2 Number of Reported Cases of Euthanasia and Assisted Suicide in the Netherlands ............................. 49 Table 2.3 Cause of Death According to Physician Interview (PI) and Death Certificate Data in the Netherlands ...................................................................................... 50 Table 3.1 Medical Practitioner Support for Law reform regarding Voluntary Euthanasia (VE) ........................... 8 1 Table 3.2 Factors Associated with Attitudes and Experiences .............................................................................. 88 Table 4.1 British Association of Social Workers Response Rate by Country ..................................................... 104 Table 4.2 BASW non-Response Rate by Country .............................................................................................. 104 Table 4.3 Demographic Variables for BASW Sample ....................................................................................... 110 Table 4.4 Dependent and Independent Variables ................................................................................................ 112 Table 5.1 Cross Tabulations Policy Involvement with Legalization, the Dutch Model and Reporting a Colleague ........................ 144 Table 5.2 Cross Tabulations Involvement in Decision-Making with Legalization, the Dutch Model and Reporting a Colleague. ............................................................. 146 Table 5.3 Cross Tabulations Self-Realization with Legalization, the Dutch Model and Reporting a Colleague .............................. 153 Table 5.4 Cross Tabulations Personal Experiences with Legalization, the Dutch Model and Reporting a Colleague. ..................... 167 Table 5.5 Cross Tabulations Being Consulted with Legalization, the Dutch Model and Reporting a Colleague ............................. 169 viii