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The Lived Experience of Organ Transplantation: Miracle Or Medicine?

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The Lived Experience of Organ Transplantation: Miracle Or Medicine? THE LIVED EXPERIENCE OF ORGAN TRANSPLANTATION: MIRACLE OR MEDICINE? Geraldine Mary O’Brien Bachelor of Psychology (Honours) Murdoch University This thesis is presented for the degree of Doctor of Philosophy Murdoch University 2014 i Abstract Transplantation has revolutionised the management of end stage organ disease, and is currently the treatment of choice in many developed western nations. The success of this treatment has led to an increasing demand for it, and concomitant increase in the demand for transplantable organs. Organ scarcity is widely acknowledged as the dominant, and most persistent, problem faced in contemporary transplantation. Scarcity of available organs undergirds the gift-of-life metaphor, upon which all transplantation discourses have been founded (Fox & Swazey, 2002). Gift-of-life discourse is routinely utilised in a bid to increase donation rates and enforce a ‘construction of care’ in recognition of, and reciprocity for, the scarce and precious gift received (Sothern & Dickinson, 2011). Shaw (2012) argued that gift-of-life rhetoric is prescriptive; directing, in large part, what can be felt and said in the context of transplantation. This can be problematic, as although transplantation undoubtedly extends life, it does not do so without incurring physiological and psychological cost. The immunosuppression regimens that recipients must adhere to and the psychosocial outcomes of transplantation mean that, in effect, transplantation may represent the exchange of one set of hardships for another (Sharp, 2006). Recipients often exist in a state of ‘persistent liminality’, caught between the worlds of the healthy and the sick (Crowley-Matoka, 2005). This research was undertaken to explore the lived experience of transplantation. I was particularly interested in exploring how gift-of-life understandings of transplantation might influence this experience. Given the normative expectation of gratitude in response to a gift/benefit received (McCullough & Tsang, 2004) and the centrality of gratitude to gift-of-life discourse (Shaw, 2012), I was also interested in exploring gratitude in the ii context of transplantation. Participants were 19 (i.e., 13 heart, 6 liver) recipients, and 11(i.e., 1 liver, 10 kidney) prospective recipients. I conducted semi-structured interviews, and adopted an interpretative phenomenological approach to analysis. Results indicated that a generic model cannot be applied across the range of transplantation experiences. The psychosocial experience of receiving a heart is not the same as the experience of receiving a liver, or that of receiving a kidney. Social constructions of the particular organ being received (e.g., the liver, a life-saving organ, is more ‘precious’ than the kidney, a quality-of-life organ), and of those most likely to need that organ (e.g., liver recipients are alcoholics who are responsible for their illness) shape the experience of receiving (or waiting to receive) a heart, liver, or kidney. While all participants acknowledged an awareness of gift-of-life discourse, and its potential to direct their experience (e.g., considerations of whether or not they were worthy or deserving of the gift-of-life), many reported they did not understand transplantation in this way. Recipients did not uniformly express gratitude and, here too, the particular organ being received appeared to exert an influence (e.g., heart recipients most often expressed gratitude, while many liver recipients did not report gratitude in relation to their transplant). These findings provide new insights with respect to the experience of transplantation, and also to the experience of gratitude. iii Table of Contents Abstract i Table of Contents iii Acknowledgements ix Chapter One: Introduction 1.0 Introduction 1 1.1 Gift-of-life 3 1.2 Gratitude, and the ‘tyranny of the gift’ 4 1.3 Organ scarcity 4 1.4 The current study 5 1.4.1 Method 7 1.4.2 Expectations and discoveries 8 1.4.3 Stories 8 Chapter Two: Organ Transplantation 2.0 Introduction 10 2.1 Transplantation: A brief history 13 2.2 Transplantation in Australia 2.2.1 Donation and transplantation 15 2.2.2 Donor death 16 2.2.3 Waiting lists 16 2.2.4 Organ donation 18 2.3 The ethical practice of organ transplantation 19 2.4 Organ scarcity 19 2.4.1 Potential donors: Organ procurement 20 iv 2.4.2 Cadaveric donation, and ‘the problem of 23 death’ 2.4.3 Recipient selection, organ allocation, and 25 social worth 2.5 Organ transplantation: The gift of life? 31 2.6 Quality of life post-transplant 38 2.7 Conclusion 41 Chapter Three: Gratitude 3.0 Introduction 44 3.1 Gratitude, and the origins of contemporary 45 gratitude research 3.1.1 Positive psychology and the pursuit of 48 happiness 3.2 Gratitude theories 50 3.3 Gratitude: A complex construct 54 3.3.1 Gratitude as a personality trait 55 3.3.2 The moral imperative of gratitude 58 3.3.2.1 Gratitude as a ‘moral barometer’ 58 3.3.2.2 Gratitude as a ‘moral motive’ 59 3.3.2.3 Gratitude as a ‘moral reinforcer’ 60 3.4 Gratitude and indebtedness 61 3.5 Gratitude practices and well-being 63 3.6 Gratitude as a coping mechanism 65 3.7 Gratitude and post-traumatic growth 68 3.8 Conclusion 69 v Chapter Four: Method and Methodology: Phenomenology, and Interpretative Phenomenological Analysis (IPA) 4.0 Introduction 71 4.1 Research aim and objectives 72 4.2 Phenomenology: The philosophy underlying the 73 interpretative phenomenological approach 4.2.1 Husserl’s descriptive phenomenology 74 4.2.2 Merleau-Ponty’s existential phenomenology 74 4.2.3 Heidegger’s interpretative phenomenology 75 4.3 Interpretative phenomenological analysis (IPA), 77 and health 4.4 ‘Doing’ IPA 80 4.5 Method 4.5.1 Ethics, and the research proposal for this 81 project 4.5.2 Participants 85 4.5.3 Data collection 86 4.5.4 Schedule of interview questions 87 4.5.5 The ‘process’ of reflection 89 4.5.6 Rigour 92 4.5.7 Completion of analysis 93 Chapter Five: Deservingness and gratitude in the context of heart transplantation 5.0 Relationship of the paper to the thesis 94 5.1 Abstract 95 5.2 Introduction 96 5.3 Gifts versus donations 97 vi 5.4 Appreciation and gratitude 99 5.5 Method 5.5.1 Participants 100 5.5.2 Ethics 101 5.5.3 Schedule of interview questions 102 5.5.4 Approach to analysis 103 5.6 Analysis and discussion 5.6.1 Deservingness 104 5.6.2 Nuances of gratitude 112 5.6.3 Giving forward 119 5.7 Conclusions 122 Chapter Six: “It’s not a miracle, it’s simply good medicine”: The lived experience of liver transplantation 6.0 Relationship of the paper to the thesis 128 6.1 Abstract 129 6.2 Introduction 130 6.3 Context of liver transplantation 131 6.4 Gratitude, deservingness and shame 133 6.5 Method 6.5.1 Participants 135 6.5.2 Ethics 135 6.5.3 Approach to analysis 136 6.6 Analysis and discussion 6.6.1 Challenged identity 137 6.6.2 The role of work in establishing a valuable 140 identity 6.6.3 Some dissent toward the view that organs 144 represent the gift-of-life vii 6.7 Conclusions 150 Chapter Seven: The experience of kidney transplantation: Hope for the gift of freedom 7.0 Relationship of the paper to the thesis 155 7.1 Abstract 156 7.2 Introduction 157 7.3 Hope 159 7.4 Gratitude 161 7.5 Method 7.5.1 Participants 162 7.5.2 Ethics 163 7.5.3 Approach to analysis 164 7.6 Analysis and discussion 7.6.1 Dialysis, suffering, and hope 164 7.6.2 Hope as a social construction 170 7.6.3 Gratitude, and its vicissitudes 177 7.7 Conclusions 183 Chapter Eight: Conclusion 8.0 Introduction 188 8.1 Healthism: Transplantation in context 190 8.2 Transplantation as the gift-of-life 191 8.3 Gratitude as reciprocation for ‘the gift’ 193 viii 8.4 Inhibition of gratitude 195 8.5 Gratitude experiences 196 8.6 Alternative transplant discourses 197 8.7 Implications of this research 198 8.8 Limitations of the study 8.8.1 Unheard voices 203 8.9 Self-reflection 204 8.10 Conclusion 207 9. References 208 10. Appendices 10.1 Appendix A: Schedule of Interview Questions 245 10.2 Appendix B: Ethics Approval Numbers 247 ix Acknowledgements Although I submit this thesis as ‘my’ work, its completion would not have been possible without the contributions, guidance and support of many others. I have been blessed beyond measure, and would like to acknowledge and thank all those who have helped to make this PhD thesis a reality. First and foremost, I would like to sincerely thank the heart, kidney and liver recipients and prospective recipients who shared their experiences with me. I have been deeply moved by the extent to which they entrusted me with their stories, their innermost thoughts and ‘secrets’. My wish is that this thesis might contribute to ongoing research aimed at providing more sensitive and effective ways in which to support them. I would like to thank my supervisor Ngaire Donaghue for the guidance, support, and encouragement offered over the course of this thesis. She shared her extensive knowledge of social psychology and qualitative research methods across many meetings and lengthy discussions. I very much appreciate her seemingly ceaseless patience! My sincere thanks also goes to Iain Walker, my co-supervisor, for his wit and wisdom. I am grateful to my mother, Mary Lehane, for always being my staunchest supporter (through both good times and bad). Special thanks also to my father, Tim Lehane for the love of learning and desire for education he instilled in me.
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