https://orcid.org/0000-0002-6220-7096
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ABSTRACT
Deep brain stimulation (DBS) uses electrodes implanted in the brain to modulate dysregulated brain activity related to a variety of neurological and psychiatric conditions. A number of people who use DBS have reported changes that affect their sense of self. In the neuroethics literature, there has been significant debate over the exact nature of these changes. More recently, there have been suggestions that this debate is overblown and detracts from clinically-relevant ways of understanding these effects of DBS. In this paper, we offer an alternative approach to understanding the effects of DBS on the self, drawing on John Sadler’s work on self-illness ambiguity. We argue that self-illness ambiguity is a complex concept, with at least three different aspects, and that each of the three aspects we identify also characterizes one kind of DBS-related change. Our analysis also suggests ways of helping patients to adjust to life as a DBS user.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Notes
1 The earliest report in the medical literature appeared several years before these papers (Houeto et al. Citation2002); however this earlier paper is not generally cited by neuroethicists.
2 Because of this, Fréderic Gilbert (Citation2013) has characterized these patients as experiencing the ‘burden of normality.’
3 Increasingly, DBS is being used earlier in the course of Parkinson’s Disease (Schūpbach et al. 2013). It remains to be seen whether this changes the prevalence or character of self-related changes experienced by patients.
4 Other reports are similarly global, including those of one patient who developed mania after receiving DBS for OCD (Kraemer Citation2013), and another who experienced no improvement in OCD symptoms, but felt happier with DBS and so wished to keep the implant and stimulation (Schermer Citation2011).
5 We suggest that Baylis’s 2013 paper has been particularly influential in shaping further discussions of DBS and the narrative self.
6 It may be worth distinguishing between, on the one hand, the way that someone talks about their illness and the extent to which it affects their identity, and on the other, self-illness ambiguity. Someone may well say, for example, “I am asthmatic” or “I am diabetic” and experience this as an important part of who they are, without experiencing the kind of ambiguity Sadler discusses.
7 Dings and Glas (Citation2020) make a similar, though not identical, distinction, arguing that people may experience ambiguity both in their understanding of their illness and their understanding of their self. We will return to a discussion of their paper later.
8 “Disease”, in this literature, is used broadly to include a range of clinical entities including injuries, impairments, and disorders. In this paper, we will use “disease” and “disorder” interchangeably to refer to such clinical entities.
9 An objection might be raised here that mental disorders are physical disorders, even if we have not yet characterized their specific pathophysiology. While many people do think of mental disorders as involving (e.g.) altered brain chemistry, neither scientists nor the public generally refer to them in terms of neuropathologies.
10 DBS patients do not, of course, see or feel the electrodes in their brain, though the battery pack beneath the skin of their chest may serve as a physical reminder of the presence of the neural implant.
11 We realize that there is much to be said about what it means for a mental state to be caused by an individual themselves versus a disorder, but settling what it means is well beyond the scope of this paper. Here we want only to acknowledge that this distinction does describe an experience that someone who has a mental disorder may have.
12 Both Schechtman and Strawson also address the normative question of whether we should experience our lives as narratives; this issue is outside of the scope of our concerns in this paper.
13 We follow Strawson here in using the asterisk to distinguish the kind of self relevant to discussions of personal identity from the self understood as simply a persisting human animal.
14 To be clear, Schechtman has moved away from the idea that personal identity is constituted by a self-narrative, but she still considers such narratives to be valuable and important for many people’s self-understanding (Schechtman Citation2007).
15 Here it is also important to remember that some unwanted changes to self might come not from having the implant itself, but rather occur as a result of the nature of the disease. For example, PD, as a neurodegenerative disorder, can cause patients to experience unwanted changes to the self, from it which might be hard to disentangle effects of the implant on the self. By contrast, this complexity would not occur for patients with dystonia, whose disease does not lead to severe neuropsychiatric symptoms seen in advanced PD.
16 Newer DBS systems may be easier to come to terms with because, for example, the cables connecting the battery are less obvious to the user, and users do not have to feel or see any part of the device. Still, there will be those for whom the very thought of a neural implant is disconcerting.
17 Brown draws on work that suggests that people who use a wheelchair, or a white cane, come to think of these tools as extensions of themselves.
18 Here, Brown’s discussion of trade-offs remains relevant, as this acceptance depends on their being important benefits, in terms of symptom relief, to using DBS.
Additional information
Notes on contributors
Robyn Bluhm
Robyn Bluhm is an Associate Professor in the Department of Philosophy and Lyman Briggs College at Michigan State University. Her research examines the relationship between epistemological and ethical issues in medicine and neuroscience, with a particular focus on psychiatry. She is a co-editor of The Bloomsbury Companion to Philosophy of Psychiatry as well as of the journal IJFAB: International Journal of Feminist Approaches to Bioethics.
Laura Y. Cabrera
Laura Y. Cabrera is the Dorothy Foehr Huck and J. Lloyd Huck Chair in Neuroethics. She is an associate professor at the Pennsylvania State University. Dr. Cabrera has been working on projects at the interface of normative, conceptual and empirical approaches, exploring attitudes and ethical concerns of professionals, patients and members of the public toward brain interventions. Her current work focuses on the responsible use of psychiatric electroceutical interventions, and the timing of deep brain stimulation for Parkinson’s Disease.