IN THE HANDS OF STRANGERS: THE MYTH OF CHOICE AND SELF- DETERMINATION FOR CHRONIC PAIN PATIENTS IN ONTARIO 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 SOCIOLOGY YORK UNIVERSITY TORONTO, ONTARIO NOVEMBER 2017 © GUADALUPE CONSUELO DYSON, 2017 i Abstract This study aimed to better understand and explain the lived experience of chronic pain patients within Ontario primary health care settings, their perceptions of self-determination, and the impact on their capacity to self-manage their condition and health-related quality of life. Through in-depth interviews with 23 chronic pain (CP) patients, this research establishes an emergent theme of alienation as a key sensitizing characteristic of the experience of the research participants. Self-Determination Theory suggests the management of pain is most effective when patients have a sense of agency and some measure of influence in their own health care. This view is consistent with the current provincial government policy of promoting Patient Centred Care (PCC). The results of this study suggest that CP respondents experience feelings of alienation in the management of their condition. This experience is evidence of a lack of self-determination created by the inability of the health care professionals to effectively put into practice PCC. ii Dedications To my son, Frederick and my sister, Mariana iii Acknowledgements A number of people contributed to the completion of this doctoral dissertation. I would like to express my deeply felt gratitude to all of them. I am extremely grateful to Dr. Brenda Spotton Visano, my advisor, and, Dr. Livy Visano, my second advisor and member of my thesis committee. This dissertation would not have come to its completion if not for their support, encouragement, guidance, and mostly for their unending patience and willingness to make themselves available to help me for over a decade. Completing this dissertation was in no small measure made possible because of the genuine direction, vast knowledge, unreserved enthusiasm and support that Dr. Brenda Spotton Visano offered at all times. She has supported me not only by providing research advice over several years, but also emotionally during my journey. I cannot imagine having had a better advisor and mentor for my Ph.D. Besides my advisors, I would like to thank the rest of my thesis and examination committees: Dr. Merle Jacobs, Dr. Linda Muzzin, Dr. Jay Goulding and Dr. Naomi Couto, for their encouragement, insightful comments, and questions. Special thanks to Dr. Linda Muzzin, for her valuable suggestions and concise comments on my thesis. Similarly, profound gratitude goes to my personal coach and boundless cheerleader, Eva Marquez: because I owe it all to you. Many Thanks! To my forever devoted, encouraging and always optimistic late friend Birnie Floyd, who believed in me and longed to see this achievement come true: I deeply miss you, and our late- night chats and laughter. Wherever you are, amigo mio, know that I made it. I am grateful to Peter Mueller, who has been a truly dedicated mentor. I am particularly indebted to him for providing his knowledge and expertise, as well as unqualified moral and emotional support. Peter’s contribution to my academic and professional life throughout this pursuit has been beyond generous. I want to thank Dr. Anthony Winson for his support, and especially for sharing his expertise so willingly throughout my work. iv I also want to acknowledge Ms. Annette Shaffer, who was kind enough to undertake the editing work; Ms. Kathryn Robinson for her support through some rough periods in the thesis journey; and, Rob de Grosbois for his assistance. Last but not least, I want to thank my family. Their presence made this journey easier. Thank you all for your encouragement! v TABLE OF CONTENTS Abstract ....................................................................................................................................... ii Dedications ................................................................................................................................ iii Acknowledgments..................................................................................................................... .iv Table of Contents ....................................................................................................................... vi List of Tables……………………………………………………………………………… .....ix List of Figures………………………………………………………………………………….x Chapter One: Introduction 1.1 Background ........................................................................................................................... 1 1.2 Thesis Statement……………………………………………………………………………4 1.3 Research Objectives……………..……………….…………………………….……..……5 1.4 Methodology………………………………………………………………...………….….5 1.5 Significance of Study………………………………………………………………………7 Chapter Two: Literature Review 2.1 Issues in Defining Pain ....................................................................................................... 10 2.2 Theories of Pain .................................................................................................................. 14 2.3 Understanding Osteoarthritis .............................................................................................. 22 2.4 Arthritis Related Chronic Pain in the Ontario Healthcare System……………………….. 25 2.5 Patient Centred Care Model at the Core of Chronic Disease Management……………….29 2.6 Self Determination Theory and Patient Centered Care .................................................. 36 Chapter Three: Methodology 3.1 Procedures of the Study ............................................................................................................... 46 3.2 The Methodology of Grounded Theory .............................................................................. 49 3.3 Research Design ............................................................................................................................ 50 3.4 Analysis .......................................................................................................................................... 64 3.3 Trustworthiness and Validity ………………………………………………………………… 66 3.5 Ethical Considerations ........................................................................................................ 69 Chapter Four: Data Analysis 4.1 Category One: Impact of Chronic Pain on Individuals ............................................................ 72 4.1.1 Physical ....................................................................................................................................... 72 4.1.2 Mental ......................................................................................................................................... 73 4.1.3 Social ........................................................................................................................................... 75 4.1.4 Economic .................................................................................................................................... 77 4.1.5 Self ............................................................................................................................................... 80 4.2. Category Two: Access to Services .................................................................................... 81 4.2.1 Affordability ............................................................................................................................... 81 4.2.2 Availability ................................................................................................................................. 84 4.2.3 Referrals (or lack thereof) ........................................................................................................ 85 4.2.4 Lack of knowledge/Education about Chronic Pain Resources ............................................ 85 4.2.5 Mental and Physical Exhaustion of CP Patients.................................................................... 86 vi 4.2.6 Shortage of GPs or Shortage of Available GPs ..................................................................... 87 4.3 Category Three: Etiology of Pain ....................................................................................... 87 4.3.1 Chronic Pain and Lack of Biological Markers ................................................................ 87 4.3.2 CP neither Diagnosed nor Treated as Stand-Alone Disease ............................................ 90 4.3.3 Backlash due to Making the Invisible Visible/ Keeping the “Invisible” Invisible .......... 91 4.3.4 Credibility and the Issue of Invisibility ........................................................................... 92 4.4. Category Four: Treatment .................................................................................................. 94 4.4.1 Treatment for Pain Relief as Optional ............................................................................. 94 4.4.2 Opiates and Pain Management......................................................................................... 94 4.4.3 Antidepressants and Chronic Pain ................................................................................... 99 4.4.4 Defensive Medicine ....................................................................................................... 100 4.5. Category Five: Family Physician