THE ROLE OF PATIENT REPRESENTATIVE IN THE MENTAL HEALTH CARE AND TREATMENT ACT by © Colleen Simms A Thesis submitted to the School of Graduate Studies in partial fulfillment for the requirements of the degree of Master of Science Division of Community Health and Humanities Faculty of Medicine Memorial University of Newfoundland October, 2016 St. John's Newfoundland and Labrador ABSTRACT The Mental Health Care and Treatment Act of Newfoundland and Labrador introduced new provisions for patient rights, including access to a Patient Representative of the patient's choosing. This thesis explores the experience of one Patient Representative and the author provides an autoethnographic narrative using her experiences as a mental health nurse, manager and policy maker during the same timeframe. Themes of lack of empathy and respect for both the Patient Representative and the client as well as the need for advocacy and management accountability were identified by the Patient Representative and supported by the author through her autoethnographic narrative. Recommendations include providing a Patient Representative role that is a paid independent advocate and creating a separate provision for families/caregivers to be involved in the treatment plan. This would support caregivers in their already full roles and allow a better balancing of the patient’s right to autonomy with the duty of care. ii ACKNOWLEDGEMENTS I first wish to acknowledge my supervisory committee, Dr. Victor Maddalena, Dr. Natalie Beausoleil and Dr. Daryl Pullman for their patience, expert and scholarly advice, support and guidance. A special thank you to Dr. Beausoleil for her encouragement to "get on with it" and for allowing me to audit her course which inspired my methodology and methods, to Dr. Pullman for his insightful comments that pulled everything together and to Dr. Maddalena whose calm and reassuring manner and thoughtful suggestions at just the right times ensured I crossed the finished line. I also wish to thank the lone participant for this study, who spent many hours in discussion with me as we journeyed together through his experiences as a Patient Representative and a caregiver. This thesis simply would not have happened without him. Finally, to my husband Larry, my children Allison (Brian), Jeff and Hillary and my parents Tom and Theresa Lundrigan, my love and thanks for your constant and unconditional support, not just during my thesis but always. This thesis is dedicated to the memory of Norman Reid, one of my first patients, who died as a result of untreated mental illness. iii TABLE OF CONTENTS ABSTRACT………………………………………………………………………………ii ACKNOWLEDGEMENTS……………………………………………………….……..iii TABLE OF CONTENTS………………………………………………………….……..iv LIST OF ABBREVIATIONS……………………………………………...……………vii LIST OF APPENDICES…………………………………………………………...…...viii Chapter 1 Introduction……………………….……………………………….…………..1 1.1 Purpose and Overview………………………………….…………….1 1.2 Study Objectives………………………………………….…………..2 1.3 Thesis Organization……………………………………….………….3 1.4 Background……………………………………………….…………..3 1.5 Rationale……………………………………………………….….….9 Chapter 2 Literature Review……………………………………………………..……...11 2.1 Introduction………………………………………………………….11 2.2 Mental Health Legislation………………………………….………..13 2.3 Factors Associated with Involuntary Commitment…..……...………19 2.4 Historical View of Persons with Mental Illness.………….………....20 2.5 Coercion….……………………………………………...…………...24 2.6 Advocacy………………………………………………..……….…..33 2.7 Patient Rights………………………………………………………...36 2.8 Families and Caregivers……………………………………………...42 2.9 Recovery……………………….………………………………….…47 iv 2.10 Conclusion…………………………………………………………51 Chapter 3 Methodology………….…………………………………………..………….53 3.1 Introduction……………………………………………..…………..53 3.2 Social Constructivist Paradigm…………………………..…..……..53 3.3 Autoethnography……………………………………….….….…….57 3.4 Method...............................................................................................65 3.5 Semi Structured Interviews................................................................66 3.6 Memory Writing/Showing and Telling..............................................67 3.7 Analysis…………………………………………………….……….69 3.8 Case Study………………………………………………….……….69 3.9 Meetings with the Participant……………………………………….71 3.10 Ethical Considerations……………………….…………..………...72 Chapter 4 Findings…………………………………………………………..…………..75 4.1 Introduction……………………………………………..…….……..75 4.2 John and Jamie………………………………….………..………….75 4.3 Lack of Empathy………………………………………..…………...78 4.4 Respect and Dignity……………………………………..…….…….82 4.5 Need for Advocacy……………………………………..…..…..……90 4.6 Management Accountability………………..…………..………..…102 Chapter 5 Discussion Recommendations and Conclusion…………………….………..107 5.1 Introduction……………………………………………….………...107 v 5.2.1 Need for Advocacy……………………………………………….107 5.2.2 Respect and Dignity; Lack of Empathy…………………...……...112 5.2.3 Management Accountability………………………………..…….113 5.3 Recommendations for Legislation……………….………..………..116 5.4 Recommendations for Policy………………….………..…..…..…..118 5.5 Limitations to the Study…………………………………….………120 5.6 Areas for Future Research………………………………...…...…...120 5.7 Conclusion………………………………………………....……….121 Bibliography………………………………………………………………...….………123 Appendices…………………………………………………………………..…...……..146 vi LIST OF ABBREVIATIONS MHCTA Mental Health Care and Treatment Act CRDP Convention on the Rights of Persons with Disabilities U.S. United States SSNL Schizophrenia Society of Newfoundland and Labrador CHANNAL Consumer Health Awareness Network of Newfoundland and Labrador ECT Electroconvulsive Treatment CEO Chief Executive Officer vii LIST OF APPENDICES Appendix A-Consent……………………………………….…….……….147 Appendix B- Letter with New Information……………….…….………...151 Appendix C-Semi Structured Interview Questions……………….………153 Appendix D- Ethics Approval…………………………………….………154 Appendix E- Ethics Amendment Approval…………………….…………156 viii ix Chapter 1-Introduction 1.1 Purpose and Overview About 500 times each year in Newfoundland and Labrador, a mentally ill person is detained against her/his will and brought to a psychiatric facility. On about 175 of those occasions s/he is hospitalized involuntarily under the Mental Health Care and Treatment Act (2006) and given psychiatric treatment without consent. Involuntary psychiatric hospitalization is coercive and usually includes detention in a locked facility. During hospitalization patients may be subjected to treatments such as potent psychotropic medication and/or electroconvulsive therapy or they may be placed in seclusion or restraints. The Patient Representative is an individual who represents a person who is involuntarily hospitalized. Involuntary patients choose whether they have a Representative and who will represent them. Family members and/or caregivers are often asked to fulfill this role. The purpose of this thesis is to review the role of the Patient Representative within the Newfoundland and Labrador Mental Health Care and Treatment Act (MHCTA). This will be done by examining one person's experience in the role of Patient Representative utilizing a case study approach within an autoethnographic narrative. 1 1.2 Study Objectives The case study will concern a caregiver for a mentally ill person who has been in the role of Patient Representative for that person on two occasions and has been in the role of caregiver for about 25 years. During those 25 years I had employment roles as a mental health nurse, manager/administrator and policy advisor/maker in the mental health system. Therefore, I have chosen to examine this case study within an autoethnographic narrative. My research questions are: 1. What is the experience of the Patient Representative role as outlined in the MHCTA? 2. What can we learn from this experience? The specific objectives of my thesis are: 1. To examine the experience of one Patient Representative before and after the MHCTA (2006) came in force, using case study methodology. 2. To support the case study data with an autoethnographic narrative of my work experience before and after the MHCTA (2006) came into force. 3. To identify what has been learned from the data about the Patient Representative role. 2 1.3 Thesis Organization This thesis is organized into 5 chapters. Chapter 2 will provide a review of literature on: mental health legislation and coercion; advocacy and involuntary hospitalization; procedural justice and human rights issues; and family and caregiver issues. Chapter 3 will provide an explanation of my methodology and methods for collecting and analysing the data. Chapter 4 covers my findings from the case study and autoethnographic narrative, including four themes identified from my interviews with the Participant. Chapter 5 discusses the data generated including: themes generated and issues associated with the Patient Representative role, the involvement of caregivers in the treatment plan, and human rights issues such as the right to autonomy vs. the duty to care. It also provides recommendations for policy related to the Patient Representative role; potential for future directions in legislation; limitations of the study and areas for future research. 1.4 Background Mental health legislation acknowledges the need to provide psychiatric treatment to the relatively small number of acutely mentally ill individuals who do not seek care because of the symptoms of their illness. Such legislation exists throughout the world and in every province and territory in Canada. The World Health Organization reports the aim of mental health