The Development of Self-Trust in DBS Patients

Abstract

Schönau et al. (2021) provides essential concepts and methodological tools for examining the complex interactions that emerge between neurotechnology and an individual's agency. The authors describe the agency dimension of trust as an individual's trust in themselves to make use of feedback provided by neurological interventions in order to effectively evaluate their own experience and choose how to act within their environments. Their discussion is restricted to issues of sensory feedback for those using brain computer interfaces (BCIs). However, this also presents an opportunity to consider the emotional effects that can result from deep brain stimulation (DBS) as a type of feedback for which individuals must develop self-trust regarding their ability to reflect and act upon these experiences. Building upon the authors' work, I discuss the relational aspects of self-trust for DBS patients, focusing on the adjustment of stimulation parameters and the future potential of autonomous neurostimulation.Consider their case study of Cora, an individual using DBS for major depressive disorder. For Cora, the relevant feedback is her feelings (or lack thereof) in response to her friend's funeral, where she is left wondering whether her emotional reaction is attributable to her DBS or to aspects of her relationship with her friend. In the same way that BCI users must learn to trust their understanding and use of sensory feedback, DBS users must learn to trust themselves in the reflection and interpretation of their emotional responses. The process of interpreting and negotiating changes to emotional experiences is of particular importance to DBS, as there is often a need and opportunity to adjust and "fine-tune" the stimulation parameters to fit the needs of individual patients. Thus, patients must identify what experiences represent desired control of their symptoms versus undesired side effects. Due to the wide range of variability with regards to disease experience, effects of DBS, and how these effects impact the abilities meaningful to individual patients, it is essential for patients to contribute actively to the process of identifying the stimulation effects that best work for them-and to trust themselves in doing so.Developing and practicing this trust occurs in the context of interactions with caregivers and close others (Brown 2020). While Schӧnau et al.'s case study describes Cora as alone in reflecting and interpreting the meaning of her emotional experience, there are often friends or family members that play an essential role in how we understand and interpret our emotional reactions, and thus support our ability to trust ourselves in acting upon these

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