Querying everyday scarcity: A feminist political economy analysis of kidney dialysis and transplantation in rural British Columbia Julia Brassolotto A Dissertation submitted to the Faculty of Graduate Studies in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Graduate Program in Health, York University, Toronto, Ontario October, 2014 ©Julia Brassolotto 2014 Abstract This thesis uses a feminist political economy perspective to analyze the findings from a case study regarding kidney dialysis and transplantation in rural and remote British Columbia. This case study was conducted in order to investigate the concept "scarcity," which is very common in organ transfer discourse. Critical ethnography and document analysis were used to examine the ways in which scarcity manifests in policy, practice, and everyday life. The main areas of focus include: the systemic context for the practices; the intersection of social location and geographic isolation; the intersection of gender, work and health; the implications of work in the local resource industry for renal health and renal replacement options; the role of unpaid care work provided by family members; and the implications of shifting care from institutions to families and individuals – particularly in a rural and remote context. Broadly, I argue that the scarcity of transplantable organs remains the dominant public discourse, that this discourse informs policies and practices, and that, despite these trends, lived experiences of scarcity at this site of study have more to do with the scarcity of human and health care resources, particular services, and health and life-sustaining resources for patients. ii Dedication For Phil. iii Acknowledgements There are many people who deserve acknowledgement for their roles in the completion of this dissertation. First and foremost, I would like to recognize the participants of my study – particularly the head nurse, staff, and patients from the dialysis clinic. I am so grateful for the time that they took to share their experiences with me. These stories were informative and insightful. I hope that I have done them justice. I would like to acknowledge and offer profound thanks to my supervisory committee. My supervisor Dr. Tamara Daly has been unbelievably supportive. She has served as a wonderful supervisor, mentor, and friend. I could not have done this without her and I am forever grateful for her encouragement and for pushing me to produce my best work. I would also like to thank my committee members Dr. Pat Armstrong and Dr. Maggie MacDonald for their excellent insights, thoughtful feedback, and support for me during this process. I feel privileged to have worked with such an incredible team of scholars and women. Special thanks are also due to Domenica Lam for her tireless work in keeping our department’s graduate students on track and for all of her administrative support over the last five years. Tremendous thanks go to those who have helped fund my research. This includes those who have provided me with: the Susan Mann Dissertation Scholarship, the Ontario Graduate Scholarship, the Abella Scholarship for Studies in Equity, Research Cost Funds (YUGSA), Fieldwork Cost Funds (CUPE 3903) and York University. I would also like to acknowledge Dr. Dennis Raphael and Dr. Joel Lexchin who have provided me with much support, encouragement, and mentorship throughout my doctorate. They are wonderful colleagues and scholars and I am so thankful that they have been a part of this process with me. Vishaya Naidoo, Cheryl Pritlove, Danielle Bishop, Craig Roxborough, & Al Barone: thank you for your friendship, for reading over comps and dissertation chapters, for acting as soundboards, for the hearty laughs and intellectual chats, and for all of your incredibly kind words. This dissertation is stronger because of you. Last, but certainly not least, I would like to acknowledge my amazing parents Dianne and Remo Brassolotto, my mother-in-law Dr. Kieren Williams, and my partner and best iv friend Phil Williams. This team’s care, love, and unconditional support have made this dissertation (and everything else in my life) possible. I am forever full of love and gratitude for you all. v TABLE OF CONTENTS Abstract ...……………………………………………………………………….….…..…ii Dedication ...……………………………………………………………….......................iii Acknowledgments ...……………………………………………………...………….…..iv Table of Contents ….………………………………………………………………….......v Introduction ...…………………………………………………………………….……...1 Key concepts …………………………………………………………………………3 Contents of the dissertation …………………………………….……………….…..5 Chapter One: Critical Perspectives on Organ Donation and Transplantation: Theory and Methodology 1.1 Introduction 1.1.2 Interdisciplinary dialogues on organ transfer ...………………………...... 11 1.1.3 Origins of the scarcity discourse & contents of this chapter …………..… 13 1.2 What are the points of contention and debate in critical organ transfer scholarship? 1.2.1 Compartmentalizing organ transfer practices …………………………..…15 1.2.2 The individual body vs. the social body ………………………………..…18 1.2.3 Bodies as sites of inequity: Implications of the individual/social body debates……………………………………………………………….……………....18 1.2.4 Transgressing boundaries: re-defining the natural ……………………...…19 1.3 How does neo-liberalism influence organ transfer policies and practices?....21 1.3.1 The acceptance of brain death in North America ……………………...….22 1.3.2 The commodification of human organs ………………………………...…23 1.3.3 Organ sales and health equity …………………………………………..…27 1.4 Why is “scarcity” so ubiquitous and what are the implications of its use? ……………………………………………………………………………………..…30 1.5 To what extent are political and economic context(s) considered in organ transfer research? …….………..…………………………………………………..34 1.5.1 Gaps in the literature ………………………………………………………38 1.6 Feminist political economy as a research methodology ……………………...39 1.6.1 Understanding feminist political economy .……………….…….…...……39 1.6.2 Structure vs. agency ………………………..…………………...…………40 1.6.3 Theory in action ………………..……………………………..….………..43 1.7 Conclusion ……………………………………………………………………...44 Chapter Two: Research Methods 2.1 Research Design 2.1.1 Research Questions ………………………….…………………….............46 2.1.2 Critical Ethnography ………………………….………………….………..49 2.1.3 Document Analysis ………………………….…………………………….53 2.1.4 Photo Elicitation ………………………….………………………………..54 vi 2.3 Ethics regarding the Site of Study ………………………….………….……...55 2.4 The Interview Process ………………………….………………………………57 2.4.1 Recruitment ……………………………………………………………..…59 2.4.2 Interview procedures ………………………………………………………59 2.4.3 Analysis ……………………………………………………………….…...60 2.5 Site of Study …………………………………………………………………….61 2.6 Limitations of the Study & Research Challenges ………………………..…. 63 2.7 Conclusion …………………………………………………………..….…...… 64 Chapter Three: Structure of the System(s) 3.1 Introduction …..……………………………………………………….………..67 3.2 Relevant Organizations ..…….………………………………………….……..68 3.2.1 Background ………………………………………………………………..68 3.2.2. Kidney Foundation of Canada – BC Branch ……………………………..70 3.2.3 BC Transplant Society …………………………………………………….72 3.2.4 The British Columbia Provincial Renal Agency (BCPRA) ……………….73 3.3 Scarcity discourses at work .……………………………………………………74 3.3.1 Public education and outreach initiatives: Scarcity discourses at the national and provincial levels …………………………………………………..………...74 3.3.2 Responding to scarcity: Changes in policy and practice ……………………78 3.4 Regional policies, practices, and points of contention ………………………..83 3.4.4 Challenges with staffing, workload, and communication ...……………….83 3.4.5 Moral distress and working with limited resources ……………………….88 3.5 Discussion ……………………………………………………………………….90 3.5.1 Scarcity discourses: implications ………………………………………….90 3.5.2 Looking towards prevention ………………………………………………95 Chapter Four: Health and Place ……………………………………………………...97 4.1 Geographic isolation …..……………………………………………………….98 4.2 Understanding rural health: health equity and demographic context ……100 4.2.1 Rural demographics and population health ………………………………101 4.2.2 Gender and geographic isolation ………………………………………...102 4.3 Findings regarding patients and family care providers ……………………104 4.3.1 The road(s) to recovery: Travel and transportation for dialysis …………104 4.3.2 “I’m not getting back on that f-ing bus”: Geographic isolation and barriers to kidney transplantation ………………………………………………………….111 4.4 Findings related to health care professionals 4.4.1 Recruiting and retaining rural health care professionals …………………117 4.4.2 Challenges with providing services to a widely dispersed population …..120 4.5 Discussion 4.5.1 Rural residence and the social determinants of health …………………...124 4.5.2 Conclusion ……………………………………………………………….128 vii Chapter Five: Work in the Resource Industries: A Feminist Political Economy Analysis ………………………………………………………………………………..131 5.1 Historical context: BC’s Gold Rush & the ethos of frontier living ………..133 5.2 Boom or bust: Challenges with work in the resource industry ....…………136 5.2.1 Men, masculinity, work, and rural identity ………………………………139 5.2.2 Impact on host communities ……………………………………………..145 5.3 Discussion 5.3.1 Commodifying labourers: Neo-liberalism and the “new” frontier ………147 5.3.2 Ethos of frontier living: Closing thoughts ……………………………….149 Chapter Six: A Feminist Political Economy Analysis of Care Work for Renal Patients ...………………………………………………………………………………153 6.1 Context(s) for caring ….………………………………………………………155 6.1.1 Gender and work inform decisions