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Bea2017.Pdf (3.251Mb) This thesis has been submitted in fulfilment of the requirements for a postgraduate degree (e.g. PhD, MPhil, DClinPsychol) at the University of Edinburgh. Please note the following terms and conditions of use: This work is protected by copyright and other intellectual property rights, which are retained by the thesis author, unless otherwise stated. A copy can be downloaded for personal non-commercial research or study, without prior permission or charge. This thesis cannot be reproduced or quoted extensively from without first obtaining permission in writing from the author. The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the author. When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given. No Heroics, Please Mapping Deceased Donation Practices in a Catalan Hospital Sara Bea PhD in Science Technology and Innovation Studies The University of Edinburgh 2016 Declaration I declare that the thesis has been composed by myself and that the work presented is my own, except where explicitly indicated otherwise in the text. (Sara Bea) ii iii Abstract This thesis presents an in-depth ethnographic mapping of deceased donation in a Catalan hospital. A unique site in terms of leading edge technoscientific practices, high rates of donation and its consolidated specialised team of transplant coordinators (TCs). The thesis situates donation as an embedded medical practice and traces the practicalities and specificities of making donation a possibility at the hospital. The empirical accounts offer a distinctive contribution that complements and challenges existing social sciences literature about donation. The latter have predominantly focused on donation as a controversial practice through highlighting the emotional experiences of donors’ families and individual medical practitioners involved. This empirical investigation mobilises, and further develops, STS material semiotics tools to provide an account of donation enacted as both procurement and healthcare. Ethnographic insights illustrate the shifting processes of mutual inclusion and exclusion that underpin the trajectory of integrating donation as a routinized hospital practice, along the recurring set of enduring tensions. This is achieved by following the work of TCs along the stages of donor detection, evaluation, maintenance, consent request and organ extraction. Crucially, the analytical focus decenters the individual actors’ perspectives, broadening the scope of the inquiry and making visible the complex sociomaterial arrangements that take place, inside and outside the hospital, which are rendered as a gradual process of assembling donations. Families’ consent to donation is essential but it is decentered, it is neither that which starts a donation process nor the only factor that contributes to the assembling of a donation process. Unlike available anthropological and sociological studies of donation this work is not about documenting the reductionist transition from patient to donor, whole to parts, person to thing and denouncing the fall from subject to object reified in donation practices. The emphasis here is on tracing the overlap between donors as patients, thus the analysis shows the shifting enactments of the embedded donor/patient configuration, which includes the donor/body, donor/person and donor/corpse figures simultaneously along the donation process. The intervention of bodies as active entities is examined through a speculative and pragmatic elucidation on the situated and relational enactments of responsive bodies and organs. This thesis contributes to contemporary re/articulations of materiality and agency through the lens of distributed joint action and entangled actors from a nonanthropomorphic stance. The research also contributes to current policy debates in the UK, and in Scotland in particular, that propose to tackle the national problem of low donation rates with a legislative move to an opt-out system for donation. It offers robust empirical evidence to contest the dominant organ shortage problematisation that is reduced to the legal polarity of either opting in or out of donation. I suggest that questions about increasing donation rates cannot be restricted to the domain of individual choice as this excludes the situated medical practices that enable the choice of donation in the first place. iv v If there is a sense of reality, there must also be a sense of possibility. To pass freely through open doors, it is necessary to respect the fact that they have solid frames ‘The man without qualities’ Robert Musil vi vii Acknowledgements This thesis would not have been possible without the five-year funding from the ESRC. I remain greatly indebted to the TC team at the Hospital Clinic in Barcelona. They have showed an unconditional acceptance of my research project from the very beginning till the end of it. I am particularly grateful for the times we shared in the hospital whilst I was doing fieldwork. They not only attended to all my demands for information, but they also made the difficult time spent at the hospital more bearable. I hope that soon I will be able to present this work to them and have another opportunity to continue our ongoing conversations. My academic tendency to unintelligibility and disperse interests have benefitted greatly from the work of my supervisors Gill and Steve. Their joint demands for clarity, consistency and justification have pushed this thesis to completion. And that they have conducted such challenging task in the most gracious and warm manner is something that I also thank them for. During the PhD I have spent quite a long time away from the STIS group at the University of Edinburgh, fieldwork, maternity leave and the final year of writing in seclusion. Nevertheless, whether in presence or in absence being part of such a remarkable group of people has been a constant source of great comfort and inspiration. It has been a great journey and one that I have been lucky enough to share with my fellow PhD students with all our pains and joys. I am particularly indebted to Meritxell, to our long-standing friendship and shared commitment to think with the STS lens, and to her firm belief that whatever I ended up writing would certainly be worth reading. Other friends have also contributed to this thesis, Josep Maria who took on the arduous task of transcribing interviews when I became just too pregnant to continue working. And more recently, Jessica, who not only proofread the thesis at the speed of light but also provided plenty of insightful and encouraging comments. Steph has, over the years and from the other side of the academic fence, also been of great help, both in celebrating the good times and being there for the not so good ones. Sam, my partner, and Oliver, our son, my dearest life companions know more than anyone else about the work that has gone into this thesis. I am thankful to Sam who has made it easier for me to concentrate on this project, and to Oliver, who on the contrary has made it more difficult by reminding me on a daily basis that doing a PhD is only one of the things I do in life. Oliver, my only hope is to persuade you one day that I have not been writing a book about dinosaurs all along! I like to believe that one day I will be able viii to produce a much more accomplished piece of work, and that it will unquestionably be dedicated to the two of you. For the time being, this thesis is, and will remain, the last product of my student life, thus I want to dedicate it to my parents, Dolors and Annibal, the ones that started it all. I am thrilled to think that even if this thesis will not travel much, asides from the examiners offices, I will soon be taking it to my parents’ home. It will sit and gather dust in a bookshelf, next to my sister’s thesis in biology, and my brother’s thesis in chemistry. Three not so different academic works and three people who are profoundly indebted to our shared family life, to the enduring world of thought and laughter that our parents have created for us. I have learned from my dad that eccentricities can come with a great deal of common sense, and that cultivating an inventive nature and a sense of wonder for the ordinary is an ongoing life task. My mum’s allergic reaction to any convention paired with a wild imagination and a sharp sense of humour has nurtured an instinct of inquiry that runs through the family and that now expands to a growing third generation. This thesis is also a product of your legacy and so it is dedicated to you, the family that I come from. ix List of Acronyms A&E – Accident and emergency department CPR – Cardiopulmonary resuscitation DBD – Donors or donation after brain death diagnosis DCD – Donors or donation after circulatory death diagnosis ECMO – Extracorporeal membrane oxygenation machine EMS – Emergency medical services ER – Emergency room HCP – Healthcare professionals ICU – Intensive care unit OCATT – Catalan transplant organisation ONT – Spanish transplant organisation OPO – US organ procurement organisation OR – Operating room PMP – national donation rate measured in donors per million population TC – Transplant coordinator x xi Contents Abstract Acknowledgements List of Acronyms Chapter 1: Introduction 1.1 – A Thesis about Mapping Deceased Donation Practices 1 …………………………………… 1.2 – The Organ Shortage Problem: Clinical Practice and Policy Debates in The UK and Spain 2
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