One important concern regarding implantable Brain Computer Interfaces (BCI) is the fear that the intervention will negatively change a patient’s sense of identity or agency. In particular, there is concern that the user will be psychologically worse-off following treatment despite postoperative functional improvements. Clinical observations from similar implantable brain technologies, such as deep brain stimulation (DBS), show a small but significant proportion of patients report feelings of strangeness or difficulty adjusting to a new concept of themselves characterized by a maladaptive je ne sais quoi despite clear motor improvement. Despite the growing number of cases in the DBS literature, there is currently no accepted or standardized tool in neuroethics specifically designed to capture the phenomenological postoperative experience of patients implanted with DBS or BCI devices. Given potential risks of postoperative maladaptation, it is important for the field of neuroethics to develop a qualitative instrument that can serve as a shared method for capturing postoperative variations in patient experience of identity and agency. The goal of this article is to introduce an instrument we have developed for this purpose and call for further neuroethical efforts to assess the phenomenology of implantable brain device use.
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This work was supported by grants from the Australian Research Council (DECRA award Project Number DE150101390), the National Science Foundation (NSF Award #EEC-1028725) and the University of Tasmania, CALE Hothouse (Exploring the interfaces: patient experiences with brain-computer interface devices for neurologic and psychiatric conditions).
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Appendix: Instrument Pilot
Appendix: Instrument Pilot
These are examples of generic questions. They are an indication of the themes to be explored (A-E) during the interviews, rather than the exact questions to be asked to patients. The choice of words, terminology or languages may change slightly for each patient*.
General questions about life pre-op.
Please tell me about when you first find out about your condition. What was going on at the time? What did you come to learn about your condition and your options for treatments? How did it impact your life?
What therapies have you tried? How did you respond to them?
How and where did you find out about this device?
What questions did you ask? What did you want to know before you were ready to say yes?
What is your understanding about how the device will work?
What factors did you consider before deciding to go through the procedure?
General questions about life post-op and device use and efficacy.
What was it like to undergo surgery?
How would you describe the process of learning to use the device? (Was it fun, difficult, frustrating, challenging but rewarding, etc.?)
What kinds of training were part of that process? How long did it take?
Can you describe what it feels like to use the device? (Is it fun, difficult, frustrating, challenging but rewarding, etc.?)
In what ways has the device been helpful (or effective)? In what ways has it fallen short?
What types of side-effects do you experience from using the device?
What worries you about your device? What do you do to deal with these worries?
In what ways do you feel you have been changed by the device? How do you perceive those changes, for example, for better or for worse?
How has the device met your expectations? In what ways has it not met your expectations? How important is it to you that these expectations were met or not met? Why?
What else do you want to know about how your device works? Now that you’ve experienced it, what do you know now that you wished you’d known before you got your device?
Questions regarding postoperative sense of the self.
How does your implant affect how you feel? Do you perceive yourself differently now vs. before your implant? That is, do you ever feel that your moods, personality, thoughts, or behaviors have changed because of your device? If so, what kinds of differences do you feel?
Have others noticed any changes in you (e.g., habits, daily activities, personality, etc.) that have occurred as a result of using the device? If so, what’s that like? Can you describe an example? What do those changes mean to you in terms of how you see yourself now?
What are your thoughts about who you are or will be in the future with this device? What hopes and/or worries do you have about how this device might change you in the future in ways you wouldn’t have changed without the device? What is behind these hopes and worries?
Questions regarding postoperative sense of agency.
Can you tell me about a time, if you’ve experienced it, when you felt that your actions were influenced by your device or that your actions were coming more from your device than from you? What was going on? What was that like? When did you realize that it had happened? In the moment? Later upon reflection?
In what ways did that experience make you feel like your actions were in some way not quite your own because of your device? Can you tell me about other times when you felt like your actions were more your own when you used your device?
Describe a time when felt like you had to “work with” or “work around” your device. What did you notice about it? How did that affect your sense of self?
What kinds of questions have your family or friends asked about your device? Have they commented on your ability to do something (or not do something) because of your device? What was going on when they made those comments? How has the device affected your relationships or trust with them?
Questions regarding postoperative sense of control.
Prior to receiving your device, how much control did you have over habits, daily life activities, your symptoms? In what ways?
How has your device made you less dependent on others? How has it made you feel more dependent on others? Please give examples of times when you’ve noticed a change in either/both ways.
Have others told you that you have better control over your yourself, your symptoms, or your life in general? If so, do you agree with them? If not, why not?
Questions regarding postoperative sense of embodiment
Can you talk about how you have integrated the device as part of your body? In what ways does it feel like it’s part of you and/or separate from you? Can you explain why you feel this way?
Some people have described the device like a tool you use to accomplish something and then stop using. Others talk about it like something that is part of you that you don’t turn on and off. What has been your experience? What do you attribute that experience to? Can you describe why you feel this way?
When the device doesn’t work the way you want it to, what happens? How do you explain the difference in expectations and performance? If you attribute blame to the malfunction, do you tend toward it being because of the device, yourself or something/someone else? Can you give an example?
How has your experience in this research project affected how you “trust” (for example, trust yourself, trust others, trust technology)? Can you give (an) example(s)?
* Family or caregiver, when possible, should also be questioned regarding whether they noticed potential postoperative self-changes.
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Gilbert, F., Brown, Dasgupta et al. An Instrument to Capture the Phenomenology of Implantable Brain Device Use. Neuroethics (2019). https://doi.org/10.1007/s12152-019-09422-7
- Deep brain stimulation
- Side effects