Does DBS Alienate Identity or Does It Simply Fail to Restore Identity Already Eroded by Illness?

Qualitative studies on new treatments give us important insights into how patients experience a treatment, and how the treatment either improves or disrupts their lives. Gilbert and colleagues’ study (Gilbert et al. 2017) is a valuable contribution to the phenomenological literature on how deep brain stimulation (DBS) as a treatment for Parkinson’s disease (PD) can influence people’s self-concept. However, there is insufficient detail about the lives of their respondents in this fascinating study. This context is needed to better interpret the authors’ results, and will clarify some of the methodological and theoretical issues they outline. The first issue that arises is how we should understand self-estrangement in the context of DBS. Although the authors provocatively title their article “I Miss Being Me,” suggesting that DBS induces self-estrangement, the authors outline that this link is only weakly supported. To start with, less than half (47%) of their respondents experienced some sort of self-estrangement. These eight respondents also described how their symptoms of PD devastated their existence. Before their DBS they already experienced self-estrangement. Thus, it seems less likely that DBS induces self-estrangement, but instead that DBS fails to restore an identity already eroded by illness. Other studies on identity change in PD support this conclusion (Nijhof 2002; Roger and Medved 2010; Platt 2004). Four respondents stated that PD enhanced their lives; these four also experienced identity continuity after DBS. However, very few details are given about this group. Why did they experience PD as enhancing their lives? Did the PD result in a much-wanted early retirement? Apart from some basic details like gender, age, and some treatment history, we know nothing about the respondents. How did PD influence their lives, their projects, their relationships? What in their lives did they hope that DBS would change? Answering these questions is essential for interpreting the authors’ category of “restorative self-estrangement. ” An interesting finding of the article is that even if DBS restores the capacities destroyed by PD, the patients can still experience self-estrangement. This self-estrangement is due to a side effect of the DBS, which the respondents call “emotional incontinence. ” Gilbert and colleagues do not explore why this emotional incontinence is so estranging for the respondents. However, Baumeister and colleagues have shown that emotions play a very important role in our decision making (Tice, Bratslavsky, and Baumeister 2001). Gilbert and colleagues cite Mackenzie and Walker (2015), stating, “The question is not whether DBS intervention threatens identity, but whether the intervention impairs autonomy competence (e.g., volitional/emotional/motivational/imaginative skills)” (102). But they explain very little about the respondents capacities: Which capacities are restored? Which of the capacities that are eroded by PD fail to be restored by DBS? Which previously intact capacities are impaired by DBS? I find the category “restorative estrangement” somewhat misleading because the estrangement does not come from the restoration of capacity, but from the destruction of other capacities.