OLDER ADULTS’ EXPERIENCES OF POLYPHARMACY AND PERCEPTIONS OF DEPRESCRIBING NETWORKS, EXPERTS, AND PARADOXES: OLDER ADULTS’ EXPERIENCES OF POLYPHARMACY AND PERCEPTIONS OF DEPRESCRIBING By: ALISON ROSS, BA(H), MA A Thesis Submitted to the School of Graduate Studies in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy McMaster University © Copyright by Alison Ross, September 2019 McMaster University DOCTOR OF PHILOSOPHY (2019) Hamilton, Ontario (Health Studies) TITLE: NetWorks, Experts, and Paradoxes: Older Adults’ Experiences of Polypharmacy and Perceptions of Deprescribing AUTHOR: Alison Ross, BA(H) (Queen’s University), MA (McMaster University) SUPERVISOR: Dr. James Gillett NUMBER OF PAGES: x, 166 ii Abstract As medical researchers test the feasibility of deprescribing programs to reduce medication burden associated with polypharmacy, limited scholarly consideration has been given to the perspectives of the older adults largely targeted by these programs. This dissertation makes central the voices of older adults experiencing polypharmacy and/or deprescribing. Presented as a collection of three articles, this work explores the perspectives of older adults on their use of medication in the context of both polypharmacy and deprescribing. Data were collected using in- depth semi-structured qualitative intervieWs With older adults concurrently using 5+ prescription medications. The first article draWs on Habermas’ writing on the contribution of communicative action in negotiating trust within complex social relationships. This analysis highlights the social nature of medication work and challenges to communicative action within personal and professional health systems. The second article applies embodiment theory to understand the Way older adults’ construct unique forms of expertise regarding their health, resulting from a lifetime of experiences living as and in their bodies. The last article uses social constructionist theories on systems of classification to show the way dichotomies in medical classifications are often paradoxical. This article offers insight into the work older adults do to optimize their use of medicines in the context of these paradoxes. This study, in its entirety, indicates a need for collective efforts to identify and address the problems of polypharmacy while facilitating appropriate polypharmacy for older adults with complex multiple co-morbidities. Doing so encourages a reframing of polypharmacy as a complex phenomenon about Which clinical judgments are made through an ongoing collaboration with the patient and family. iii Acknowledgements: This journey, both personal and academic, Would not have been possible without the dedication, support, and enthusiasm of so many people in my life. My supervisor, Dr. James Gillett, is exceptional. It means so much to have a supervisor who is willing to meet frequently, respond to emails consistently, and provide feedback readily. James gave me the space to explore, but had the wisdom to guide me more directly when needed. He is genuinely invested in his students’ professional and personal development. He was Willing to ask the challenging questions that compelled me to critically reflect on my research program specifically, and on my life more generally. And he Would sit in nonjudgmental silence while I engaged in this reflection. Thank you, James, for everything that you have done for me. My committee members, Dr. Christina Sinding and Dr. Meridith Griffin, have been bright lights throughout my years as a PhD student. Their ongoing feedback has been valuable and constructive, challenging me to find my voice as a social scientist. Thank you for being so positive and supportive. These past several years have been enriched by you both, and I have truly enjoyed myself. I hope to continue to work with you on future projects. And a special thank you to Meridith for helping me confront my imposter syndrome. It means more than you know. To all members of the TAPER Project – thank you for inviting me into your World and allowing me to participate in this important work. I have learned so much from my involvement in this project and felt welcomed and valued at every step of the way. In particular, I would like to thank Dr. Dee Mangin and Dr. Larkin Lamarche for their support. From day one you have both been available to ansWer questions and provide important information for me to complete this dissertation. Thank you for welcoming me to the TAPER Team. iv The Department of Health, Aging, and Society has been fundamental in helping me complete this thesis. Thank you to my fellow students, for being on this journey with me and for alWays encouraging one another. Thank you for making the whole process so much fun. To all the faculty, thank you for facilitating engaging seminars, offering your indispensable expertise, and for being so warm throughout the process. In particular, I would like to thank Dr. Lydia Kapiriri for encouraging me in my ongoing development as a researcher. I’ve truly enjoyed our collaborations and look forward to continued work together. I would also like to thank Dr. Mat Savelli for his continuous support of this research project and for offering his insights and expertise. I have learned so much from you. Lastly, I am very grateful to Kristine EsPiritu, for being the holder of all knowledge and the friendliest face on campus. As graduate work becomes more isolating in upper years, you are one of the best reasons to come to the department. You make a difference in all of our lives. Thank you. To the three other members of the very first HAS PhD cohort – Madison Brydges, Alicia Powell, and Rachel Weldrick – I am so lucky to have been on this journey with you. I am in aWe of your dedication to your research, your minds, and your kindness. Thank you for supporting me, especially in those first tWo years when I was lost and wanted to research everything. Thank you for being a safe space to share ideas and vent frustrations. Thank you for being amazing friends. I can’t wait to see what ground-breaking work you do. This thesis exists today because of the outstanding talents of Dr. Kathleen Steeves, Graduate Writing Consultant. Our meetings motivated me to keep writing and offered tips and tricks that were not only valuable to the writing process, but to graduate studies more generally. I carried your thesis around with me for over a year for inspiration, which was especially needed v on those days When I just couldn’t write. Thank you for being so supportive of my work, and thank you for being so kind. Thank you to the McMaster School of Graduate Studies, the Department of Health, Aging, and Society, the E.B. Ryan Scholarship, and the Gilbrea Centre for Studies in Aging for their generous support of my research over the past several years. This support has allowed me to Work on this thesis and afforded me valuable opportunities to travel to various conferences to share this work and connect with other scholars. To my family, which of course includes KB, Lope, and Chase, thank you for all that you do. My parents, Barry and Frances, and brother, Kevin, prepared me in so many ways for graduate school. They encourage me to value education. They challenge my mind and I do my best to rise to the challenge. Thank you for reading numerous essays over the years. Thank you for setting expectations high and for cheering me on. Thank you for loving me. To my friends, you bring so much joy to my life. Thank you for all the long nights, cottage weekends, and phone calls that have given me a fulfilling work-life balance. Thank you for supporting me in this work, but more importantly supporting me in balancing this work with the joys of life. Thank you for the perspective, the debates, the music, the distractions, the adventures, and the love. Perhaps most importantly, I am very grateful to the participants of this study. I have learned so much from you. Thank you for your willingness to share your experiences with me. Thank you for inviting me into your homes. Thank you for the many cups of tea, garden tours, sharing of family photographs, and follow up phone calls just to check in and keep in touch. It Was a joy to get to know each and every one of you. And of course, thank you Ali, for keeping me smiling through it all. vi Table of Contents: INTRODUCTION……………………………………………………………………………….. 1 Polypharmacy and Deprescribing as Biomedical Phenomena …………………………... 3 Polypharmacy and Deprescribing as Sociological Phenomena …………………………. 8 Research Questions …………………………………………………………………..… 18 Theory .……………………………………………………………………………...….. 21 Methods ……………………………………………………………………………...…. 31 Outline of Dissertation ………………………………………………………………..... 36 References …………………………………………………………………………….... 39 ARTICLE 1: FORMS OF TRUST AND POLYPHARMACY AMONG OLDER ADULTS… 49 Introduction …………………………………………………………………….............. 50 Communicative Action and the Formation of Trust in Social NetWorks ……………… 53 Methods …………………………………………………………………….................... 56 Findings ……………………………………………………………………................... 58 Discussion ……………………………………………………………………................ 64 References ……………………………………………………………………................ 69 ARTICLE 2: “AT 80 I KNOW MYSELF”: EMBODIED LEARNING AND OLDER ADULTS’ EXPERIENCES OF POLYPHARMACY AND PERCEPTIONS OF DEPRESCRIBING..….. 72 Introduction and Background ………………………………………………………….. 73 Embodied Learning: Physical Experience and Cognition ……………………………... 76 Methods …………………………………………………………………….................... 78 vii Findings ……………………………………………………………………..................