Staying "True to You" with Deep Brain Stimulation: A Values-Based, Caregiver-Informed Approach to Personality and Identity Changes Post-Implantation Open Access
Hurley, Meghan (Summer 2024)
Abstract
Deep brain stimulation has emerged over the last few decades as a promising treatment for a variety of neurological and neuropsychological disorders. Despite its efficacy in symptom reduction, some patients have reported negative or unwanted changes to aspects of their personality and identity that have posed challenges to their relationships and quality of life post-DBS. Moreover, these reports have sparked a contentious ethical debate about whether these changes pose a threat or harm to patient personality and identity and what an appropriate response to them may look like. As accounts from patients themselves regarding the nature of such changes continue to grow, caregivers remain an overlooked and understudied stakeholder in conversations about personality and identity change post-DBS. As such, the primary aim of this thesis is to explore the impact of DBS on patient personality and identity through the eyes of caregivers by identifying relevant themes and their frequencies in caregiver responses. With these insights, I introduce a values-based exercise for patient-caregiver dyads to articulate their own perceptions and conceptualizations of patient identity and personality pre-DBS. I propose that this exercise can help patients make more informed decisions about their care in the event that their caregiver perceives identity and personality changes post-DBS.
Table of Contents
Introduction 1
Goals and Objectives Stated 2
Research Questions 3
Organization 3
Chapter 1: Background 4
Brief History of Neuromodulation 4
Deep Brain Stimulation 5
Ethical Concerns 6
Changes to Identity 14
Changes to Self (and Authenticity) 16
Changes to Personality 17
How Can We Know that DBS Poses a Threat to Patient Identity and Personality? 20
The Importance of Relationality and Relational Identity 20
Role of Caregivers 24
Chapter 2: Methodology 25
Research Design 25
Study Organization and Data Collection 26
Table 1. List of caregivers according to patient condition 27
Data Analysis 28
Chapter 3: Results 29
3.1 Personality 29
Pre-surgery Interviews 29
Post-surgery Interviews 31
Table 2. Negative personality / behavioral changes 33
Table 3. Persistent patient characteristics post-DBS surgery. 34
3.2 Identity-related Concepts 34
Pre-surgery Interviews 34
Table 4. Notable quotes regarding patient identity and their disorders pre-aDBS surgery. 35
Post-surgery Interviews 35
Table 5. Caregiver perspectives of observed identity persistence post-surgery. 37
Table 6. Further comments relating to the impact of DBS on identity. 37
3.3 Dimensionality of Identity and Personality Persistence 38
3.4 Changes Perceived by Others 39
Table 7. Personality and identity changes perceived by others. 40
Chapter 4: Discussion 40
Personality Changes 41
Identity-Related Changes 46
Dimensionality of Identity and Personality Changes 47
Relational Identity and the Value of External Perspectives 50
A Way Forward? Caregiver Perspectives in DBS Decision-Making 52
In Practice 59
Limitations 62
Conclusion 63
References 65
Appendix A: Staying “True to You” with DBS Patient-Facing 83
Appendix B: Staying “True to You” with DBS Caregiver-Facing 86
About this Master's Thesis
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