Introduction: Problems of Authenticity and Alienation in the Use of DBS

Outline of the Paper

Deep brain stimulation (DBS) is a practice that has been used since the late 1980s mainly for Parkinson patients, but also for the treatment of diseases such as epilepsy and for the experimental treatment of psychiatric and other diseases (cf. [1, 2]).Footnote 1 In DBS for Parkinson patients, a so-called ‘brain pacemaker’ is implanted, and its electrodes in the brain stimulate either the subthalamic nucleus or the globus pallidus ([3]: 533ff.) in order to treat movement disorders, tremors, and freezing that are typical for Parkinson’s disease. While DBS can vastly improve motor abilities, it is well-known that DBS can also have psychiatric side-effects, such as hypomania and manic episodes ([4], cit in [5]). The fact that DBS as a treatment sometimes brings about personality changes invites philosophical considerations about problems of personal authenticity and alienation in this context. It raises the question of whether, under treatment, patients feel no longer like themselves. In other words, we may wonder whether under treatment patients can remain‚ authentic ‘or become‚ alienated’ from their true selves (notions I define below in Section Felt Authenticity and Felt Alienation: Some Conceptual Clarifications).

In order to bring out the relevance of the notions of authenticity and alienation to the neuro-ethics of DBS, I focus on several case studies of patients under DBS treatment (cf. [6]). What is significant about these narratives is that they each involve elements of authenticity and alienation, although not in a uniform way. Some patients claim under treatment that they feel authentic, i.e. like themselves, and regard their life with Parkinson’s disease retrospectively as a time of alienation. Other patients, however, claim that the treatment deprives them of their authenticity and that they no longer feel like themselves when under DBS. As a first approximation, one could say that it seems as if DBS could threaten authenticity and bring about alienation in some cases, whereas it generates feelings of authenticity in others.

Accordingly, in this article, I argue for the following thesis: We should take into consideration patients ‘feelings of authenticity and alienation when talking about the chances and challenges of deep brain stimulation. The concepts of authenticity and alienation are useful heuristic tools not only for a better philosophical understanding of the patients’ experience of DBS, but also, in some cases, the use of these concepts can even lead to a re-evaluation of the treatment and its side-effects, and should, therefore, contribute to future ethical reflection on DBS.

While it is not my aim in the current paper to suggest specific ethical guidelines for treatment, I do wish to suggest that future ethical discussions will profit by considering the notions of authenticity and alienation, which I outline here. I argue that we must do further research on the relevance of authenticity and alienation to patients treated with DBS in order to gain a deeper philosophical understanding, and to develop the best evaluative criterion for the behavior of DBS patients. If research supports the thesis of the present article, then the tools psychologists and doctors currently use to evaluate DBS patients should be complemented by philosophical considerations, because the medical accounts alone are failing to take into account the important subjective-dimensions of authenticity and alienation. This is deeply problematic because it doesn’t give the doctor, patient, or family involved the fullest sense of what is going on, nor does it give them clear guide-lines for how to evaluate the patient’s behavioral changes.

While there is indeed a plethora of literature on the ethics of DBS, there is not much literature that deals specifically and systematically with the questions of authenticity and alienation, as I do here. An exception is the recent article on narrative identity and self-experience under DBS by Müller et al. [7] that brings in the concepts of authenticity and alienation. Many of its findings support the thesis of the present article.Footnote 2 However, the majority of authors tackle issues related to authenticity in the context of DBS, such as personal identityFootnote 3 [811], patient autonomy and responsibility [1, 2, 12, 29, 35, 36], and happiness (cf. [13]) without actually focusing on authenticity.Footnote 4 Meanwhile, Carter et al. raise the problem of authenticity in the context of the medication of patients with dopamine sensitive drugs, but not in the context of DBS [14]. Finally, Bolt brings up the issue of authenticity in the context of neuro-enhancement [15]. However, with the exception of Müller et al. [7], none of these recent articles on authenticity and neuro-ethics focus primarily on DBS.Footnote 5 By my lights, this is a gap in the literature, which this article attempts to begin filling in.

In order to support my view, I begin, in Section Felt Authenticity and Felt Alienation: Some Conceptual Clarifications, by giving a minimalist definition of what I mean by the concepts of authenticity and alienation. In section A Philosophical Interpretation of Some Case Studies from Schüpbach et al. [6], I then present three case studies from a psychological report by Schüpbach et al. [6], offering a philosophical analysis of these cases in light of authenticity and alienation. In Section Conclusions, some conclusions follow: When analyzing the case studies from a philosophical point of view, aspects of the patients’ experience are emphasized, which are not fully appreciated in the psychological assessment. As we will see, for many of the patients, their experience involved recognizing, exploring, and enacting what they regarded as their ‘true selves’.

The most important aim of this paper is to bring out a subjective side of DBS treatment, which has so far not received the attention that it ought to receive. My goal in presenting these case studies is to illuminate the ways in which the subjective notions of authenticity and alienation are relevant to the philosophical and ethical discussion of DBS, as well as to how we are to evaluate the behavior of DBS patients.

Felt Authenticity and Felt Alienation: Some Conceptual Clarifications

The terms ‘alienation’ and ‘authenticity’ have a long philosophical history and have been recently revitalized in current debates in social and moral philosophy. While the concept of ‘alienation’ has its roots in Marxism, it has recently gained purchase in current discussions in social philosophy (cf. 39). Meanwhile, the concept of ‘authenticity’ with its rather heterogeneous roots in the work of St. Augustine, Jean-Jacques Rousseau, and existentialist writers such as Kierkegaard, Heidegger, and Sartre, has gained more and more attention in recent decades, beginning with Lionard Trilling’s famous lectures on sincerity and authenticity as moral ideals ([16]; cf. [17]: 46).Footnote 6 Indeed, ‘authenticity’ underwent a renaissance in the 1980s, triggered by Charles Taylor’s Sources of the Self [18] and The Ethics of Authenticity [19] (cf. also [20]: 29f.), and, even now, we see it playing a role in important debates in bio-ethics, which I discuss below. However, in spite of the resurgence of these concepts in contemporary debates, ‘authenticity’ and ‘alienation’ are notoriously vague concepts, and I want to offer some preliminary remarks to clarify how I will be using them here.

In general, I regard authenticity and alienation as felt mental states, where authenticity is indicated by a person saying things such as ‘I feel like myself’, and alienation is indicated by statements such as ‘I am not myself’ or ‘I am no longer myself’. On my interpretation, authenticity and alienation are opposites: a person who is authentic is not alienated, and vice versa. In other words: ‘alienation’ here means ‘inauthenticity’. Moreover, I take authenticity and alienation to be experiences, which involve an important normative dimension: we experience authenticity as something we ought to strive for, whereas alienation is experienced as something we ought to avoid. In this regard, my account draws on Trilling’s and Taylor’s views of authenticity and Rahel Jaeggi’s account of alienation, which I discuss below. That being said, while authenticity and alienation are indicated by the above kind of statements, this does not mean that they are simple phenomena. As I suggest in what follows, the experience of authenticity and alienation are multi-dimensional, and, although, I take my starting point from the above mentioned feelings of being ‘myself’ or ‘not myself’, I think it best to keep the details of these experiences fairly flexible and wide open, at least for now. In what follows, I treat these two notions in a normative way, i.e. I regard authenticity as a state to be striven for, and alienation as a state to be avoided or overcome.

Therefore, before we proceed, I want to say a bit more about the ‘normative’ connotations I take to be built into the notions of authenticity and alienation, for this is a contentious issue. Let’s begin with the normative underpinnings of authenticity. As mentioned before, the more recent use of ‘authenticity’ as a normative term can be traced back to Trilling’s lectures, where he argues that authenticity is a moral ideal ([16]; cf. [17]: 46). This normative use of authenticity was furthered in Taylor’s work, The Ethics of Authenticity [19], where he describes how authenticity became a moral ideal, especially in the United States (cf. also [20]: 29f.). Between the work of Trilling and Taylor, then, the notion ‘authenticity’ has emerged or re-emerged as a normative concept, capturing a moral ideal that a person ought to strive for and a virtue one ought to possess ([41]: 2).

Even more recently, authenticity construed in this normative fashion has shaped debates in applied ethics, in particular, the organ transplantation debate and the debate about enhancement. In the debate about organ transplantation, authenticity plays a role, insofar as the question has been raised concerning when a patient regards her transplanted organ as a part of her real self, and the ethical issues that arise accordingly (cf. [21]). Meanwhile, in the enhancement debate, the notion of authenticity plays a major role as well, where the question has been raised concerning whether enhancement interventions lead to the revelation of the ‘true self’, e.g. whether the intake of lifestyle drugs, such as the antidepressant Prozac, leads to ‘feelings of authenticity’ (cf. e.g. [17, 22]). As Carl Elliott puts it in Better Than Well: American Medicine Meets the American Dream: ‘The ideal of authenticity drives much of the language that patients and clients use to describe their use of enhancement technologies. Technologies from Prozac to face-lifts are routinely described as tools of self-discovery and self-fulfilment’ ([17]: 30). In this context, enhancement has been regarded positively as a means to achieving the ideal of authenticity and as something that enables self-realization.

By my lights, what we see in both bio-ethics debates is that the notion of ‘authenticity’, construed in a normative fashion and understood as self-realization, is helpful in our efforts to understand the ethics of the medical interventions at stake. Indeed, as I will show in this article, the normative notion ‘authenticity’ can be fruitfully applied to the topic of DBS.Footnote 7 As we will see, some reports suggest that some DBS patients feel that they have found their ‘real’, ‘better’ or even ‘ideal selves’ under treatment.Footnote 8 This suggests that, under therapy, they have become how they always wanted to be and call this their ‘real selves’. Such an experience accompanying a neuro-intervention is oftentimes facilitated by increasing feelings of self-confidence and self-love (cf. [22]: 175). Thus, DBS seems to allow some patients to achieve ‘authenticity’ and achieve the ideal they have been striving for.

However, it should be noted that some authors express doubts whether ‘authenticity’ is a normative concept and whether it should play a prominent role for ethical assessment at all (cf. [23]). For them, ‘authenticity’ is just a synonym for a positive, pleasant state of mind and, therefore, a superfluous notion. Accordingly, for them, it is not a normative concept and should not be used for ethical assessment.

A way to meet this objection is to point out that on my interpretation, authenticity involves feeling like oneself, but this does not necessarily mean that this is a pleasurable experience. In other words, the feelings of pleasure sometime come apart from the feelings of ‘like myself’. Vice versa, a state of alienation can even be subjectively experienced positively – Heidegger’s ‘Das Man’ would be a good example. Yet, some authors who want to discard ‘authenticity’ as a normative notion in ethical debates actually use this idea to their advantage. For them, the very fact that ‘authenticity’ can designate something negative is a sign that it cannot be taken seriously as a normative concept at all, because if it isn’t something desirable, it isn’t clear how it could be a virtue to seek or an ideal to pursue.

I think these objections are valuable insofar as they press on the fact that it is very difficult to identify what exactly is involved in the feeling of authenticity. This is due, in part, to the fact that the concept of authenticity is an amalgam arising out of different traditions, each of which uses the concept to identify different phenomena. And, insofar as we have inherited the notion from these traditions, our own understanding of authenticity does and should reflect these multiple dimensions of authenticity. Indeed, authenticity cannot be distilled to one particular, simple phenomenon; rather, it is a complex phenomenon, with many different aspects and sides.

Nevertheless, it is my view that there is a complex phenomenon associated with ‘authenticity’, which has normative underpinnings and promise as a tool in ethical assessment. This has been borne out in the recent debate over enhancement. As mentioned before, in this debate, we have seen the notion of authenticity gain purchase because it has proven to be useful in the efforts to describe numerous relevant phenomena, phenomena which are crucial to understanding the ethics of enhancement (cf. [24]). Given these promising results in the enhancement debate, we have reason to be hopeful that the notion of ‘authenticity’, used in the positive, normative sense can shed light on our understanding of the ethics of DBS. Indeed, as we will see in the case studies below, some patients claim to feel like they have found their ‘true selves’ or ‘ideal selves’ and cite this as a desirable outcome of their treatment, which suggests that authenticity, normatively construed, does have purchase in the debate over DBS.Footnote 9 In the end, though, while the notion of authenticity should play a part in these debates, in order to do justice to its various aspects, it seems wise to keep the exact meaning of ‘authenticity’ as open and flexible as possible at the beginning. Still, the common starting point for my analysis of the case studies will be the normative notion that centres around a patient feeling ‘like herself’ after treatment.

Turning our attention now to the notion of ‘alienation’, as I said before, I take this to be a felt state, which is the opposite of authenticity, indicated by statements such as ‘I no longer feel like myself’. Just as with ‘authenticity’, it is a mistake to think that ‘alienation’ is a simple, straightforward feeling; rather, it too is a multi-dimensional phenomenon. My understanding of it comes close to what Jaeggi defines in a recent monograph on alienation as ‘a relation of relationlessness’ (in the German: ‘eine Beziehung der Beziehungslosigkeit’; [25]: 12). Footnote 10 More precisely, Jaeggi claims, ‘alienation is said to consist in a distorted relation to oneself and to one’s world that can be characterized as the failure adequately to appropriate oneself or the world, to make oneself or the world ‘one’s own’.Footnote 11 As she suggests, a feeling of alienation from oneself is often intimately connected with feeling alienated from things closely related to a person, i.e. from her own body, from her work, from social relationships, or from her partner and family.Footnote 12 This feeling of alienation has negative consequences, such as the following suggested by Frederick Neuhouser: ‘a sense of meaninglessness or estrangement, a loss of power in relation to self and world, and a subjugation to the products of one’s own activity’ [26]. As will become clear later on, exactly these feelings play a key-role in the DBS narratives. Moreover, just as with ‘authenticity’, it seems ‘alienation’ has potential in certain bio-ethics debates, because if a patient feels alienated as a result of treatment, this should be taken into considerations in our normative assessment of those treatments.

So far, I have suggested that authenticity and alienation are normative notions that turn on subjective self-ascriptions; however, it should be noted that a person’s self-assessment can, of course, conflict with what other people say about her, be it family or friends. Although self-acclaimed authenticity is a subjective notion, this does not rule out the possibility that other people can reasonably contribute to a person’s self-understanding and, to some degree, can even intersubjectively correct it (cf. [27]). As the first three case studies show, the first- and the third-person perspective (i.e. the one of family members, doctors, and psychologists) and their respective ascriptions of authenticity to a person can differ sharply when it comes to assessing whether a person is authentic or alienated.

Ultimately, the aim of the present article is to shed some light on the normative underpinnings of the dimensions of felt-authenticity and felt-alienation of DBS patients in order to show that these notions should play a key role in the ethical debate about DBS – a discussion that has up to now mainly centered round the concepts of autonomy and responsibility.

A Philosophical Interpretation of Some Case Studies from Schüpbach et al. [6]

The Case Studies

In what follows, I present and interpret three case studies of patients who experienced behavioral changes after DBS treatment. These case studies stem from an article by Schüpbach et al. [6] in the journal Neurology. In that article, Schüpbach et al. report their findings from a study conducted by psychologists, neurologists, and a psychiatrist between 2000 and 2003 of 29 Parkinson patients (15 male, 14 female) treated with DBS. The interview technique is described as ‘[r]epeated open, unstructured interviews conducted by trained psychologists […], neurologists […], and a psychiatrist […]’ in order to ‘qualitatively assess the impact of STN stimulation on the patients’ personal, marital, and socio-professional life.‘([6]: 1811f.).Footnote 13 The original aim of the study was to ’prospectively examine ‘kinds of ’social maladjustment experienced by 29 patients with PD before and 18 to 24 months after bilateral STN stimulation’ ([6]: 1811, my italics, FK).Footnote 14

However, I argue that the emphasis on the notions ‘social adaptation’ and ‘maladaptation’ or ‘maladjustment’ fails to capture an important dimension of the patients’ experience, namely, the subjective experience of authenticity and alienation. Accordingly, I offer a different interpretation of these cases, relying on the heuristic tools of authenticity and alienation, which aims at showing that the application of these concepts makes the content of the case studies more accessible to philosophers and ethicists, and, moreover, reveals that what the psychologists interpreted as ‘maladaption’ can, in fact, be interpreted in a different and positive philosophical light. This suggests that maybe we need to construct new tools for evaluating patients’ behavior in the future, which reflect not only the third-personal ‘adaption’ criteria, but also the first-personal self-ascriptions of authenticity and alienation. We are now in the position to look at some case-studies.

Patient 1: ‘I don’t recognize myself anymore, […] I feel like a machine’Footnote 15

Patient 1, a 38-year-old female journalist married with one child, had PD (caused by a mutation in the parkin gene) for 30 years […] with motor fluctuations and severe dyskinesias. Before stimulation, in spite of her motor handicap, she was dynamic: ‘Combating the disease gave meaning to my life. I hope that stimulation will allow me to get on with my life and my projects. ‘Six months after the operation, the patient was not satisfied in spite of a 75% improvement of her motor handicap and the withdrawal of her antiparkinson medication. She complained that the stimulator was not well programmed and she wanted to be able to adjust it herself at home. After 18 months of stimulation, she was no longer able to work, had a loss of inspiration and a taste for her work and for life in general. ‘Now I feel like a machine, I’ve lost my passion. I don’t recognize myself anymore. ‘Her family no longer interested her, she was easily exhausted, and had a loss of vitality (in the absence of a depressive syndrome), which led her to interrupt all professional activity. In short, a loss of vitality and a goal in life occurred despite major improvement of her motor symptoms by STN stimulation. ([6]: 1812).

A short analysis of this case reveals that four elements of felt-alienation and the loss of authenticity are at work in the patient’s experience:

First, after successful treatment, the patient feels alienated from her work and indulges in leisure activities instead.Footnote 16 This will be surprising to the reader given that she proclaimed that one of her main aims in undergoing the treatment was enhancing her ability to work. However, although her motor disability has improved remarkably, she nevertheless experiences her formerly much-beloved work as alienating after surgery.

Second, she experiences alienation from herself because she has lost a goal in life. It seems that this is the case because she no longer has anything to fight for and this has resulted in a loss of energy. She even goes so far as to say,‘I don’t recognize myself anymore’ – presumably because she used to be goal-oriented and energetic, but now has lost her drive, which she identified with. This corresponds with what Schüpbach et al. [6] suggest:

Fighting PD was a driving force for many patients that was frustrated in 12 (41%) after surgery […] causing disorientation. As expressed by another patient: ‘Before stimulation, I wanted to be like everybody else, I didn’t want to be considered only as sick. I fought for that every day! Now I find myself less impassioned, I regret the period where I did battle. Now it’s the warrior’s repose, I no longer have something to struggle against, my life is empty. I get up every day, but have no goal, no horizon.’ ([6]: 1814).

Third, the patient feels alienated because she feels heteronomous – ‘like a machine’, as she puts it. The case report does not give any details, but this may be due to the fact that a mechanical device is implanted in her brain. Phenomenologically speaking, it could be that the patient perceives the device as an alien technology that, as it were, remote-controls her feelings, behavior and thoughts (cf. [21]: 169 ff.)Footnote 17. Another patient reports feeling ‘like an electronic doll’ ([6]: 1815). As Schüpbach et al. put it: ‘The altered body image may result from difficulty in accepting psychologically the implanted material, as previously described in patients with pacemakers and implantable cardioverter defibrillators.’Footnote 18

What is interesting here, however, is that the self-description of some patients of being remote-controlled by an electronic device runs contrary to the patients’ actual gain in autonomy, because their motor abilities usually improve remarkably under treatment. In a certain sense, patients become more autonomous after successful surgery because they have a better command of their body. But in another, Aristotelian sense, a feeling of heteronomy arises: if a person is not entirely ‘self-moved’, but is or feels moved by a force outside her control, she might feel heteronomous. In this case study, the feeling of heteronomy goes hand in hand with the patient feeling alienated from life.

Fourth, this case raises another key issue involving authenticity and alienation: the split between mind and body. The authors of the study even chose this phenomenon to be the report’s subtitle: ‘A distressed mind in a repaired body’. They reveal that some patients experience feelings of alienation from their improved health condition. As the authors also report about other patients, some of them do not yet dare to trust their bodies and are aware of the fact that their disease will come back at some point (‘negative anticipation’). ‘In spite of successful surgery, 8 patients (28%) felt mentally unable to resume a more normal life style. Although with STN stimulation they could, they did not dare to perform activities that had been impossible with PD before surgery. Past experience led to a negative anticipation that was objectively unjustified after surgery. ‘My body is cured, but my mind is still sick,’ said one patient ([6]: 1814). This is exemplified by Patient 1: although she describes herself as physically healed, her psychological condition cannot catch up to this new bodily state. This results in a feeling of alienation because the patient experiences her body as being in a state different than the one of her mind.Footnote 19

To sum up these findings, this first case study shows a patient who, under treatment, has lost her felt-authenticity and eventually feels alienated from herself in several respects. After treatment, not only does her work-life seem alienating, but also she feels alienated from life-goals she identified with, as well as from her new, improved body (cf. [6]: 1814).Footnote 20 In the following case study, however, the patient experiences an opposite result.

Patient 2: ‘During all these years I was asleep, now I am going to take my life in hand, my life before PD’

‘Patient 2, a 48-year-old male accountant, worked half-time for 7 years because of PD […]. Before the operation, his wife assisted him in all tasks of daily living, assumed all domestic and financial responsibilities, spent hours with him, and helped him to conceal his disease from his entourage. After 18 months of stimulation, his motor condition was much improved […]. The patient regained confidence in himself and aspired to more autonomy: ‘I want to recover my social standing and establish new relationships outside my couple. During all these years of illness, I was asleep. Now I am stimulated, stimulated to lead a different life.’ Confronted with the radical change in her husband’s behavior, his wife became depressed: ‘Ever since the operation, I feel lost. Before, when he was sick, we were a perfect couple. Now, he wants to live the life of a young man, go out, meet new people, all of that is intolerable! I would rather he be like he was before, always nice and docile!’ The patient persisted in his desire for change: ‘All these years I allowed myself to be carried like a child, because I didn’t have the means to fight. That period is over, I want to get back the position I left open. I am going to take my life in hand, my life before PD.’ In short, a grave marital conflict was caused by the newly regained autonomy of the patient and his wife’s loss of status as caregiver. ([6]: 1812)

This story differs considerably from the first one. This patient says that under treatment he now feels like himself, whereas before he felt alienated, i.e. not himself. In this case, what is gained from the treatment is authenticity, qua implicit self-ascription at least. The patient claims that in all the years of illness he was ‘asleep’. This can be interpreted as him saying that he was not aware of himself, i.e. not in a self-conscious mode and, therefore, in this sense not really ‘himself’.Footnote 21 From a philosophical point of view, this could mean that he did not possess any self-reflective capacities and could not lead his life autonomously.

As he puts it after successful surgery: ‘I want to regain my life, my life before PD’. In stating this, he refers to the life before his illness that was really his, his real life, he being conscious of himself and ‘master of his own destiny’, as one could say. During the years of illness, however, according to his own retrospective assessment, he feels he was not himself, i.e. inauthentic, alienated, and not fully conscious. His life was not really his own, existing as someone else’s heteronomous object of care. This is at least how he describes his time of illness in hindsight.

With respect to authenticity and alienation, at least three points about his case are important.

First, the patient’s self-ascription of authenticity is interesting. It seems that, after surgery, the patient distinguishes two modi in his life. On the one hand, there is ‘mode one’, the mode he experienced when he was healthy before Parkinson’s disease struck him. This mode he experiences retrospectively as his ‘authentic mode’. On the other hand, there is ‘mode two’, the mode he experienced when he became sick. He says in hindsight that this mode is one in which he was not authentic, but ‘asleep’ and thus alienated. Finally, once he is successfully treated via DBS and switches back to ‘mode one’, he begins to feel authentic again.

The second remarkable point is that this contradicts what Patient 1 had reported. Adapting the model from above, she experienced ‘mode two’, i.e. the mode of being diseased, as her most authentic mode. When she was sick, she had something to strive for: to overcome her disease and to lead a meaningful life despite her handicaps. The daily struggle gave her life meaning. When she returns to ‘mode one’ as the mode of health, however, she describes herself as feeling alienated, because she has lost her goal in life. It seems she no longer experiences herself as authentic once she is healthy.

On a theoretical level, this points towards the fact that the ascriptions of authenticity and alienation depend on subjective factors. It seems there is no general, trans-individually valid correlation between being healthy and feeling authentic, and being sick and feeling alienated. On the one hand, an existentialist or phenomenological notion of authenticity, which emphasizes mortality, fits for Patient 1: a person is ‘authentic’ (eigentlich) only when she is confronted with her vulnerability and thereby her mortality through her disease (cf. [28]: 152) and struggles for survival. On the other hand, however, the opposite holds for Patient 2: he defines himself essentially as a healthy person and does not accept the diseased person he used to be as himself. Furthermore, the fact that there is no unifying account of the subjective experience of DBS has implications with respect to how we understand DBS treatment. Whereas the treatment for one person can be authenticity-generating, for another, it has an alienating effect.

Third, it is worth noting that Patient 2 correlates authenticity, i.e. living his own life, with autonomy. For Patient 2, in order to be himself, he must be autonomous like an adult person, not dependent and heteronomous like a child. He wants to return to the autonomous social- and work-life he led before the disease – and the treatment makes this possible.

This, of course, stands in sharp contrast to the second- and third-person perspective of his wife. According to her, her husband is alienated from himself in ‘mode two’, the healthy state. She complains he wants to ‘live the life of a young man’, i.e. a life that is not only inappropriate to him in her eyes, but actually is the life of someone else and not his. Additionally, now that she as the caregiver is no longer needed and wanted, she has lost all meaning in her life. She wants to get divorced, because she feels alienated from her relationship with a person who she no longer views as her husband.

The third case presented by Schüpbach et al. [6] reveals yet another feature of authenticity and alienation.

Patient 3: ‘I want to be recognized as sick’

Patient 3, a 45-year-old female executive, married with 3 children, had levodopa-responsive PD for 6 years […] with severe motor complications. Before the operation, she was ashamed to be sick and concealed her disease from her colleagues and employer. She invested herself in her work, assumed more and more responsibilities, and had great hopes that the operation would help her to progress in her career: ‘If I’m not operated in the coming months, the beast is going to sleep. As long as I have my work, I still exist; the day I can no longer go to work, it will be as if the curtain came down on my life. ‘Six months after the operation, she had no trace of a motor handicap […]. She put off going back to work, however, because she felt anxious, had lumbar pain, dizziness, difficulty walking, but had no neurologic substrate. […]. An episode of severe depression was treated successfully. Eighteen months after the operation, she had tried several times without success to go back to work:’ I don’t have the same ability to concentrate as before. I have a lot of work and prefer to spend my time doing other things. ‘She requested unjustified sick leaves, preferred to go out, buy things on the Internet. She threatened to divorce, although there had been no marital conflict before the operation. She announced her disease to her entourage, was active in associations, and wanted to ‘be recognized as sick.’ In short, a loss of professional status after the operation occurred, in spite of spectacular motor improvement, which was the cause of a marital crisis.Footnote 22

Here, at first glance, the picture is very similar to the first case: now that the patient’s condition has improved, she experiences leisure as authenticity, whereas she experiences work as alienating. The cured patient prefers to spend her time doing other things outside her employment, spending money on the internet and joining social activities. However, in contrast to the first case study, it is interesting to see that now that the patient’s body condition is improved drastically, she somehow paradoxically wants her disease acknowledged.

Before the treatment, she had attempted to hide her disease from her family, employer, and colleagues. Now that she is better than before, it seems that she, to a certain extent, actually denies being better and does not want to recognize her own improvement.Footnote 23 The fact that she demands attention for and recognition of her diseased state, even when she is ‘healthier’ than before, suggests that she identifies her diseased state as her authentic state. Similarly to Patient 1, the bodily self-image of Patient 3 seems to be dissociated from her mind. Her mind is still that of a sick person, although it has gained the strength to now recognize and even publicly proclaim her disease, whereas her body improved already – a fact that does not seem to have made it through to her consciousness. Her battle-cry is: ‘I want to be recognized as sick’, now that her symptoms are much better than before surgery.

All in all, to me the case of Patient 3 reads like a story of emancipation, revelation, or even revolt. It even sounds as if she regarded her personal, retrospective coming out as a Parkinson’s patient as a political mission, probably also willing to fight for the rights of other people in her situation.Footnote 24

If we use the notions of alienation and authenticity, we can shed light on Patient 3’s experience. We could interpret the patient’s situation before treatment as alienating: she used to live a life under permanent pressure, being an ambitious working mother who has PD, and who, on the top of that, felt the need to conceal her ailment. DBS helps this patient reach a state authenticity, insofar as she is now able to be sincere, honest, and self-confident with respect to herself. In hindsight, the patient truthfully recognizes her own past condition and pays herself due respect for all she has undergone and has nevertheless achieved. Paradoxically, this happens at the very moment she experiences a substantial relief of most of her preeminent PD symptoms. Her newly gained self-confidence makes her demand full recognition for her achievements from others as well. In this vein, due to the treatment, she has gained the strength to be truthful and open with the people in her life, making her disease public instead of shamefully trying to hide it. Now that her bodily symptoms have remarkably improved, it seems that the time is ripe for her to reap some ‘reward’ and compensation for all the hardships she underwent during her disease.

To sum up: interpreted this way, what is important in this third case study is that the patient escapes from felt-alienation through treatment and achieves a state of authenticity as a result. Here, authenticity means liberation and emancipation.

So far, I have offered an interpretation of these three case studies within the philosophical framework of authenticity and alienation; however, as I mentioned above, my interpretation differs from the conclusions that the authors of the study draw. In the following section, I want to turn my attention to their conclusions and to what, from my vantage point, is unsatisfying in their account.

The Psychologists’ Conclusions: Social Maladjustment

Leaving the quantitative details aside, let’s consider the conclusions drawn by Schüpbach et al. [6].Footnote 25 Conducted within the framework of a psychological and psychiatric assessment, the main aim of the study was to show that treatment via DBS can result in ‘social maladjustment’, i.e. in patients having difficulties getting along in their professional, social, and private lives. As the authors put it:

There was a contrast between the marked improvement in parkinsonian motor disability, activity of daily living, and quality of life and the fact that social adjustment did not improve. […] The operation is, therefore, likely to contribute to social maladjustment […] ([6]: 1816).

The authors distinguish three areas of difficulties: ‘patient’s experience’, ‘the couple’, and ‘professional activity’ ([6]: 1813f.).

The first category, ‘patient’s experience’, is the most important one for this paper, and the authors of the study associate it with different problems. The most pressing issue given my purposes is that more than the half of patients articulated ‘a feeling of strangeness and unfamiliarity’ with themselves after surgery, saying things like ‘I don’t feel like myself any more’, or ‘I haven’t found myself again after the operation’. This phenomenon is what I, from a philosophical point of view, analyzed as Patient 1’s loss of authenticity and feeling of alienation, i.e. a ‘relation of relationlessness’ to oneself.Footnote 26 Furthermore, 20% of the patients reported that they reflected negatively on the relation between their bodies and the implant: as the authors remark, three female patients ‘had difficulty accepting the presence of an electronic device in their brains, saying things like ‘I feel like a robot’, or ‘I feel like an electronic doll’.Footnote 27 Among the other problems that appeared in the category of ‘patient’s experience’ after surgery was the fact that 41% of the patients complained about a ‘loss of vitality’ ([6]: 1813). Moreover, as is mirrored in the title of the study already, another problem arose for patients who became aware of the above-mentioned tension between their ‘healed’ bodies and their ‘distressed minds’, which were not yet able to trust in the new bodily capacities (cf. [6]: 1814). Last but not least, 41% complained of a ‘loss of aim in life’. As the authors remark: [‘f]ighting PD was a driving force for many patients’ that is no longer there after surgery (cf. [6]: 1814).

Second, in relation to the category of ‘the couple’, the authors point out that ‘following neurosurgery, the majority of couples had new or continuing marital conflicts’ (cf. [6]: 1814).

Third, with respect to the category of ‘professional activity’, the authors remark that ‘work became a secondary issue for many successfully operated patients’ (cf. [6]: 1815).

What I want to emphasize here is the fact that the authors of the study assess the change in the patients’ ‘behavior as negative. As the report puts it, several patients’ became more direct in their approach to others’, became overly talkative, ‘irritable, and impatient’ ([6]: 1814). The authors proceed as follows:

They expressed their opinions more freely and revealed their formerly concealed PD to outsiders, as if they had become disinhibited. As a result, preexisting tension in a couple or a minor deterioration of professional performance (in terms of reliability, punctuality, correctness, persistence) could degenerate into familial conflicts or maladjustment at work. ([6]:1814)

Here, the psychologists suggest that treatment brings about negative results in the patients’ social and professional lives. Indeed, the key-word in their psychological diagnosis was ‘maladaptation”, a term laden with negative value.

There are, of course, patients of whom I think they would willingly accept ‘maladaptation’ as a description of their own inner experience after surgery. To name only one example, Patient 1 utters that she does not recognize herself anymore under DBS ([6]: 1814). In this case, the negative perspectives of the psychologists and the patients indeed converge. However, there are cases, such as Patient 2 and Patient 3, where the patients feel authentic, i.e. have positive feelings after surgery, but the psychologists still assess their situation negatively.

It is these latter cases that deserve closer attention and a philosophical reevaluation. In contrast to the psychological evaluation, in these and analogous cases, my philosophical assessment suggests a different, positive way the narratives should be interpreted: after surgery, it is not maladjustment or alienation that the patients experience, but rather self-proclaimed authenticity.Footnote 28 To be sure, the patients’ family and colleagues have difficulty dealing with them after surgery. In this sense, the patients in question indeed seem to no longer be well-adapted to their environments. However, from a philosophical point of view, the reader might wonder whether there is anything intrinsically wrong with the new attitudes and behavior of patients who describe their own inner experience positively, as one of authenticity. As I show in what follows, it is not at all clear that the patients’ personality change should be regarded as intrinsically negative. If the behavioral change turns out to be positive and not just negative, then this may have significant implications for the patients’ self-understanding and future life, not to mention for how we are to assess the patients after treatment.

Alienation from Alienating Conditions? A Philosophical Re-evaluation

Whereas Schüpbach et al. [6] are of the opinion that the treatment sometimes leads to social maladjustment and thus interpret its outcome as negative, we should wonder how the patients themselves describe their change. In the patients’ reports, do they describe it as a negative change? Or do they, instead, regard it as positive and as an improvement? If they, after surgery, describe their new life as authentic and their former lives with PD as alienating, [37, 38] then there is reason to suspect that those patients do regard the outcome of DBS as a positive change. Indeed, one could assume that they probably prefer not to be ‘adjusted’ any longer to their former lives, because those lives are something they feel alienated from. In other words: from the patients’ point of view, some of them seem to have begun to feel alienated from alienating conditions, and, therefore, no longer want to adapt to them. Consequently, what appears as negative ‘maladjustment’ to the psychologists and to other third partiesFootnote 29 could be a positive experience for the patients themselves, from their subjective point of view. A philosophical perspective should pay attention to this possibility because it could contribute to a more well-informed ethical discussion of the treatment of DBS patients.Footnote 30 The philosophical results become clearer if we have a look at the three case studies again.

Patient 1 states that she no longer recognizes herself after treatment. In her case, DBS seems to have led to a state of felt alienation.Footnote 31 In her, treatment has not brought about a positive change. However, in contrast, Patients 2 and 3, according to their reports, indeed seem to regard the treatment as authenticity-generating, in spite of the fact that the psychologists assess the outcome in the negative sense of ‘maladjustment’. The story of Patient 3, as I suggested, can be interpreted positively as one of revolt and liberation. Why should be speaking out freely on one’s own disease be a sign of ‘disinhibition’ as the authors of the study put it? Why should a society that discriminates against people who are affected by a disease and that suggests revealing their condition be an appropriate environment to which one should adapt? Maybe the conditions under which Patient 3 had been working were alienating, exploitative and inhumane themselves, putting too much pressure on her? Meanwhile, Patient 2, who explicitly states that he regards the time when he had the disease as a time of alienation, seems to now look forward to resuming his professional life. As described in detail above and according to his report, he perceives himself as being awakened to his full consciousness. Yet, he seems to now feel alienated from his marriage, and his wife expresses her alienation from his ‘new personality’. From a philosophical point of view, however, I think it is by no means clear that his development should be regarded negatively as a case of ‘maladjustment’. Relative to the interests of the patient himself, it could rather be that quitting this relationship (that seemed to have had its smothering sides) could even be a step towards more authenticity and autonomy for him.

If we understand cases 2 and 3 in this light, i.e. as patients breaking free from previously alienating conditions, it becomes doubtful whether they themselves regard their behavioral changes as ‘maladjustment’. In this light, a philosophical analysis should consider the possibility that for them these changes could be positive, involving ‘insight’ or ‘revelation’.Footnote 32 According to the reports, for patients 2 and 3, under treatment it turned out that they experienced their professional and/or love life as alienating, and that they didn’t want to resume it. It seems that they eventually found new ways of leading their lives according to their new preferences.

In the Introduction, I claimed that it makes sense to talk about the patients’ felt-authenticity and -alienation when considering the chances and challenges of deep brain stimulation. Having discussed the case studies in this light, I have shown that the concepts of authenticity and alienation are helpful heuristic instruments in interpreting DBS cases in a philosophically meaningful way. In some cases, this even leads to a new evaluation and a new assessment of the patients that differs from the psychological one, taking the subjective experiences of authenticity and alienation into account.


What is the benefit of interpreting the case studies in light of the notions of authenticity and alienation?

To begin, we saw that by employing the philosophical framework of authenticity and alienation, we are led to call into question the psychological assessment of the three case studies of Parkinson patients who underwent changes in their personalities and preferences after successful treatment with DBS [6]. The psychologists interpreted the behavioral changes in the patients in a negative light, as forms of social maladjustment; however, it turned out that appreciating the subjective dimension of felt-authenticity and -alienation suggests that the patients’ experiences are more nuanced than the psychologists recognized. We saw that a philosophical re-interpretation of these cases revealed that for some patients, what the psychologists called a ‘state of social maladjustment’ was actually experienced by the patients as a positive state, a ‘state of authenticity’.Footnote 33 This suggests that when evaluating the ethical, psychological, and social implications of behavior changes that result from DBS, the subjective state of felt-authenticity and felt-alienation should be taken into consideration.

What’s more, when analyzing the case studies from a philosophical point of view, aspects of the patients’ experience are emphasized, which are not fully appreciated in the psychological assessment. As we saw above, for many of the patients, their experience involved recognizing, exploring, and enacting what they regarded as their ‘true selves’. In this sense, part of the patients’ experiences included coming to terms with feelings of authenticity and alienation brought about by treatment. Moreover, their narratives mirror different aspects of authenticity and alienation in their relations to their partners, their own bodies, and their professional occupations. Thus, an important part of the patients’ experience involved the ways in which felt-authenticity and felt-alienation was brought about through treatment via DBS. While these reported subjective dimensions seem important for our understanding of patients’ experiences, they were only brought to the fore when we employed the philosophical tools of authenticity and alienation.

What I have aimed to show in this paper is that we should regard the concepts of authenticity and alienation as, at least, possible factors we need to take into account in the philosophical, ethical, and medical considerations of DBS treatment.Footnote 34 Future research has to show whether the concepts of authenticity and alienation really can help contribute to a more nuanced understanding of such cases and can eventually inform ethically responsible decision making when it comes to the treatment of Parkinson patients via deep brain stimulation. But, for now, we should realize that this is research that ought to be undertaken.