Hope for a peaceful death and organ. donation

Hope for a peaceful death and organ donation Holly Louise Northam RN, RM, Master of Critical Care Nursing (UC) A thesis submitted for the degree of Doctor of Philosophy in Health University of Canberra March 2015

Acknowledgments My sincere thanks go to the families whose voices are characterised within this thesis. I cannot thank you enough for your courage and generosity in entrusting me to represent your experience. I must also acknowledge the many patients and families I have cared for who have taught me much about the human spirit, especially forgiveness, resilience and love. I have been exceptionally fortunate in my supervisors. My deepest thanks go to Professor Mary Cruickshank for her professional expertise, wisdom, kindness and continual belief in me. I am also extremely grateful to Dr Gylo (Julie) Hercelinskyj and Dr Kristen Ranse for their support, humour and care. I would also like to acknowledge Elite Editing who provided editing and formatting support. There are so many people to thank who have contributed to this work by inspiring me in their dedication to excellence and humanity. I would like to particularly acknowledge my colleagues and mentors, especially Professor Valerie Braithwaite, Mary Ivec, Bruce McDowell, Brian Myerson, Marvin Weinman and Dr Maria Gomez. My family and friends have supported and sustained me throughout the study. My parents, Judy and Tim Terrell encouraged and challenged me, my nephew Rian was a terrific RA. My children, Jaimie, Kiri and Christabelle provided me with unfailing love. Finally, I must acknowledge my darling Geoff, who unwearyingly and lovingly shared the trials and tribulations of my PhD journey. To you all, I am eternally grateful. These three remain: faith, hope and love, and the greatest of these is love (1 Corinthians, 13:13). i

Table of contents Acknowledgements Certification Table of Contents List of Tables List of Figures List of Appendices List of Abbreviations Glossary of Terms Abstract i ii iii vii viii x xi xii xiii Chapter One Introduction 1 1 Introduction 1 1.1 Background to the Study 4 1.1.1 The Imperative of Organ Transplantation 4 1.1.2 Legislative Context of Deceased Organ Donation Decision-Making 6 1.1.3 Public Discourse Regarding Deceased Organ Donation Decision-Making 9 1.1.4 Deceased Organ Donation Decision-Making Communication Strategies 11 1.1.5 The Request for Deceased Organ Donation 13 1.1.6 Defining the Clinical Circumstances of Deceased Organ Donation Decisions 14 1.1.7 Contexts of Unexpected End of Life Family Decision-Making 19 1.1.8 Health Care Professionals and Deceased Organ Donation Decisions 20 iii

1.1.9 Bereavement Implications for a Family s Deceased Organ Donation Decisions 22 1.2 Purpose and Aims of the Study 23 1.3 Significance of the Study 23 1.4 Methodology and Theoretical Framework 25 1.5 Limitations and Major Assumptions 28 1.6 Organisation of the Thesis 29 1.7 Conclusion 31 Chapter Two Literature Review 2 Introduction 32 2.1 Literature Sources 33 2.2 Section One: Historical Overview of Death and Organ Donation from a Global Perspective 33 2.2.1 Scientific Understandings of Death 36 2.2.2 Consequences of Heart Transplantation 38 2.2.3 Proof of Death 40 2.2.4 Revising Brain Death Criteria 45 2.2.5 Primum non nocere 47 2.2.6 An Overview of Transplantation Practices 50 2.2.7 Australian Perspectives on Deceased Organ Donation 55 2.3 Section Two: A Focused Review of the Evidence-Based Organ Donation Literature 59 2.3.1 Factors that Influence Family Decisions through the Lens of Organ Donation Organisations 60 2.3.2 Requesting the Gift of Organ Donation, Viewing Care at End of Life 89 2.3.3 Exploring Deceased Organ Donation Decisions Through the Lens of the Decision-Makers 103 2.3.4 Conclusion 121 2.4 Section Three: Theoretical Framework 122 2.4.1 The Precaution Adoption Process of Decision Making 123 2.4.2 Hope 135 2.4.3 Deep Hope 137 2.4.4 Trust 140 2.5 Conclusion 146 Chapter Three Methodology 3 Introduction 148 iv

3.1 Justification of the Research Paradigm 148 3.2 Axiology 152 3.3 Justification of the Research Design and Methodology 156 3.3.1 Empirical Materials 157 3.4 Research Procedure 160 3.4.1 Recruitment Strategy 162 3.4.2 Sampling Strategies 163 3.4.3 The Setting and the Sample 164 3.4.4 Instrumentation 165 3.4.5 Pilot Study 168 3.4.6 Data collection procedure 170 3.5 Justification of the Data Analysis Technique 173 3.6 Ethical Considerations 175 3.7 Credibility and Trustworthiness 178 3.7.1 Researcher Reflexivity 182 3.8 Transferability 184 3.8.1 Methodological Limitations 185 3.9 Conclusion 186 Chapter Four Analysis and Findings 4 Introduction 188 4.1 Justification for the Data Analysis Technique 189 4.2 Demographic Characteristics of Participants 196 4.3 Pre-event Attitudes and Expectations 202 4.4 The Results of Thematic Analysis of Interviews with Decision-Makers 203 4.4.1 Theme One: In the fog drowning 210 4.4.1.1 Sub-theme 1.1: This is how it happens 220 4.4.1.2 Sub-theme 1.2: Stop all the clocks 235 4.4.2 Theme Two: It s all up to Mum 245 4.4.2.1 Subtheme 2.1: Well you never give up hope 249 4.4.2.2 Subtheme 2.2: Trust protected 263 4.4.3 Theme 3: Harvesting Humanity 277 4.4.3.1 Subtheme 3.1 Sack of parts 286 4.4.3.2 Subtheme: 3.2: Sacrifice of peace at death 291 4.5 Conclusion 310 Chapter Five Conclusion 5 Introduction 312 5.1 Reflection on the Modified Precaution Adoption Process Model 312 v

5.2 Three Major Conclusions 321 5.2.1 Conclusion One: Deceased Organ Donation Decisions Involve 4 Key Decision Points 321 5.2.2 Decision Point One 322 5.2.3 Decision Point Two 323 5.2.4 Decision Point Three 328 5.2.5 Decision Point Four 336 5.3 Conclusion Two: Hope, Deep Hope and Trust Influence Donation Decisions 337 5.3.1 The Role of Hope 338 5.3.2 The Role of Deep Hope 340 5.3.3 The Role of Trust 342 5.4 Conclusion Three: Most families Perceived Organ Donation Required the Sacrifice of Peace at Death 350 5.5 Implications for Policy and Practice 354 5.5.1 Implications for Policy at Decision Points 1, 2, 3 & 4: The Influence of female Decision-Makers 356 5.5.2 Implications for Policy at Decision Points: 3 & 4: Surgical Delay and Dehumanising Practices 359 5.5.3 Implications for Policy at Decision Points: 1, 3 & 4: Perceptions of Medical Conflict of Interest 361 5.5.4 Implications for Policy at Decision Points: 1, 2, 3 & 4: Communication 363 5.5.5 Implications for Practice at Decision Points: 1, 2, 3 & 4: End of Life Care 364 5.5.6 Implications for practice at Decision Points: 1, 2 & 3: Emergency Department 367 5.5.7 Implications for Practice at Decision Point 3: Declaring Death and Organ Donation Processes 369 5.5.8 Implications for Practice at Decision Point 4: Acknowledgement, Reciprocity and Bereavement Care 370 5.6 Limitations of the Study 371 5.7 Recommendations for Further Research 372 5.8 Conclusion 375 Reference List 378 Appendices 419 vi

List of Tables Table 2.1 Definitions of Hope, Deep Hope and Trust used in this Study 123 Table 3.1 Seventeen Interviews Conducted with 22 Participants from Nine Families 165 Table 3.2 Interview Guide 167 Table 4.1 Example of data extracts with codes 192 Table 4.2 Example of codes identified in phase 3 analysis 193 Table 4.3 Family Demographics: Participant Pseudonym, Relationships to the Deceased and Primary Decision-maker Role 193 vii

List of Figures Figure 2.3.1 The Model of the Precaution Adoption Process used in Decision-Making (Weinstein, 1988). Stages 1 and 2 are more Relevant to Autonomous Decision-Making. Stages 3, 4, and 5 which are Highlighted in Blue, are Particularly Relevant to Deceased Organ Donation Decision-Making 126 Figure 2.3.2 The Two Contexts of Deceased Organ Donation Decision-Making: Autonomous and Family Decisions 130 Figure 2.3.3 Theoretical Framework using the Precaution Adoption Process Model of Decision-Making (Weinstein, 1988), which has been Modified to Propose that Hope (Snyder, 2002 and Deep Hope, (Coulehan, 2011) Influenced by Trust, (Job, 2007) are used to Underpin Family Organ Donation Decisions. 134 Figure 4.1 Thematic analysis showing major themes 195 Figure 4.2 Twenty-two Decision-Making Experiences that Contributed to Nine Decisions of Deceased Organ Donation 197 Figure 4.3 Context of the Nine Donation Decisions 197 viii

Figure 4.4 Donation Decision Outcomes 198 Figure 4.5 Geographical Context of Crisis Event and Declaration of Death 200 Figure 4.6 Process used to determine death 201 Figure 4.7 Consent decision outcomes 202 Figure 4.8 An Overarching Representation of the Family Decision-Making Process of Deceased Organ Donation in Relation to the Model of Decision-Making 208 Figure 4.9 The Three Major Themes and Sub-themes 209 Figure 4.10 Theme 1 In the fog drowning and its Sub-themes 210 Figure 4.11 Theme 2 It s all up to Mum and its Sub-themes 245 Figure 4.12 Theme 3 Harvesting Humanity and its Sub-themes 277 Figure 5.1 The Deep Hope 4 Point Precaution Adoption Decision-Making Model 315 Figure 5.2 The 4 Decision Points of Organ Donation Decision-Making Process and the Major Factors that Influence each Decision Point 322 Figure 5.3 The Deep Hope 4 Major Decision Points of Deceased Organ Donation across Time, Deep Hope (Coulehan, 2011), Hope (Snyder, 2002), and Trust (Job, 2007) and Intention and Precaution in Decision-Making (Weinstein, 1988) 338 ix

Appendices Appendix 1. Invitation to Public to Participate in Study 419 Appendix 2. Letter of Approval from Ethics Committee 421 Appendix 3. Letter of Introduction to the Study Participants 425 Appendix 4 Participant Information 428 Appendix 5 Consent Form 429 x

Abbreviations ANZICS Australia and New Zealand Intensive Care Society AODR Australian Organ Donation Register ACCCN Australian College of Critical Care Nurses ATCA Australasian Transplant Coordinators Association DBD Donation after Brain Death DCD Donation after Cardiac Death DO Designated Officer ED Emergency Department ICU Intensive Care Unit NODC National Organ Donation Collaborative OPO Organ Procurement Organisation TSANZ Transplantation Society of Australia and New Zealand xi

Glossary Death The Australian Law Reform Commission (1977) defined death as the a) irreversible cessation of all function of the brain of the person or b) irreversible cessation of circulation of blood in the body of the person. Deep hope This idea is drawn from palliative care literature. Deep hope is defined as: a layer of hope that underlies this experience and may continue to exist, or even thrive, during a time when the patient[and their family] has very few somethings left to hope for (Coulehan, 2011, p. 144). Empathic neutrality Patton (2002) uses this term to describe an interview technique whereby the interviewer uses a nonjudgemental approach which demonstrates attentiveness, openness, sensitivity, respect, awareness, and responsiveness (p. 40) to establish a vicarious understanding of the participant experience. Family Family was defined as those that self-select as family of the deceased, that are recognised as family in the naturalistic setting, and were involved in the family decision-making process. Consistent with realworld experiences, family may include people without a legally recognised relationship. Depending on jurisdictional clinical practices, these people may or may not be involved in the formal decision-making action of providing written consent for organ donation. Hope Hope Theory was defined by Snyder (2002) as the perceived capability to derive pathways to desired goals, and motivate oneself via agency thinking to use those pathways (p. 249). Moral Discernment A concept discussed by Christians (2005) that sees an unfolding alignment of a common moral understanding which takes place in the interaction and collaboration of the researcher with the researched. Christians (2005) argues this is a radical alternative to the individualism of modernity (p.155) and is an idea that aligns with the philosophical stance of this study. Trust The definition for trust used in this study combines rational and relational trust and is defined by Barber (1983) as social learned and social confirmed expectations that people have of each other, of the organisations and institutions in which they live, and the natural and moral social orders, that set the fundamental understandings of their lives (p. 28). xii

Abstract The therapeutic, social and economic benefits of organ transplantation are irrefutable; however, organ shortages contribute to avoidable patient deaths and burgeoning health care costs. This problem can be addressed by increasing family consent to deceased organ donation. There are high levels of community support for deceased organ donation in Australia and yet, almost fifty percent of families decline the request to donate. Increasing the number of families who agree to deceased organ donation is key to increasing national and international transplantation rates. The purpose of this study was to identify the major factors that influence a family to agree or decline deceased organ donation during the process of decision-making. The aims of the study were three-fold: to identify the key stages and the major influencers in the decisionmaking process; to determine if hope, deep hope and trust played a role in the decision, and to explore families perceptions of their decision-making experience. The study utilised an exploratory case study approach to examine the family decisionmaking process of deceased organ donation. Following ethics approval, recruitment was conducted utilising a qualitative purposive snowball strategy across Australia. A pilot study was conducted to test the study procedures prior to the main data collection, and 22 participants who had been involved in a deceased organ donation decision from nine families were interviewed. In five deaths family members had agreed to organ donation, and in four deaths the family declined. A theoretical framework based on the Precaution Adoption Process Model of decision-making was applied to propose trust, hope and deep hope underpin family organ donation decisions. xiii

Thematic analysis was conducted and three key themes comprising In the fog drowning, Harvesting humanity, and It s all up to Mum were revealed. The study found women, and in particular mothers, played a significant role in organ donation decision-making, and that the decision-making is bounded by family needs of trust, hope and deep hope across the continuum of time. It also found families who had their trust, hope and deep hope needs met expressed satisfaction about their decision-making experience and agreed to organ donation. Some families perceived that organ donation was a sacrifice that was too great to endure, even if the deceased had previously indicated intent to donate, and therefore declined donation. This study found that families ideas of a peaceful death and organ donation are not mutually exclusive. It concludes that when decision-makers trust and deep hope needs are met they are more willing to agree to donation. This study recommends that the idea of a right to a peaceful death should be aligned with deceased organ donation practices and normalised. xiv