While deep brain stimulation (DBS) for patients with Parkinson's disease has typically raised ethical questions about autonomy, accountability and personal identity, recent research indicates that we need to begin taking into account issues surrounding the patients’ feelings of authenticity and alienation as well. In order to bring out the relevance of this dimension to ethical considerations of DBS, I analyse a recent case study of a Dutch patient who, as a result of DBS, faced a dilemma between autonomy and authenticity. This case study is meant to point out the normatively meaningful tension patients under DBS experience between authenticity and autonomy.
- Deep Brain Stimulation
- Philosophical Ethics
- Technology/Risk Assessment
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Introduction: feelings of authenticity and alienation under deep brain stimulation
Deep brain stimulation (DBS) is a treatment used mainly for patients with Parkinson's disease that helps control Parkinson symptoms. It involves the implantation of a device called a ‘brain pacemaker’, which connects electrodes implanted in a patient's brain to an electronic pulse generator that controls those electrodes, located beneath the patient's keybone. The electrodes stimulate the thalamus or other parts of the patient's brain and thereby help control Parkinson symptoms. Worldwide, numerous patients are currently treated via DBS, and a considerable number of them experience psychosocial side effects.1 While the literature in neuroethics has tended to focus on side effects involving personality changes and problems relating to autonomy and accountability, there are also problems relating to what could philosophically be described as feelings of authenticity and alienation.2 As a recent study by Schüpbach et al (2006) reveals, these feelings emerge in different ways in different patients: some patients report that after having undergone DBS they feel as if they are their ‘true selves’; others, however, say that after treatment they no longer recognise themselves and feel alienated. This and other evidence suggests that the patients’ subjective experience of feeling authentic or alienated is normatively significant in the context of DBS; however, it has not yet received close enough attention in the neuroethics debates about DBS.3
Yet, though the concept of authenticity has not played a major role in debates about DBS, it has become increasingly important in neuroethics more generally and has even started competing with the well established ethical concept of autonomy. This is evident in the debates over the ethics of psychopharmacological neurointerventions. The fact that numerous patients under treatment with the antidepressant Prozac, say they feel ‘like themselves’ for the first time in their lives has ignited considerable ethical discussion.4–,6 Here, the probably most well known work is Peter Kramer's study Listening to Prozac.5 The present article attempts to show that these sorts of considerations are also relevant in the context of DBS. In order to bring this to light, I will discuss a recent case study that reveals how feelings of authenticity can play an important role in a patient's experience of DBS; indeed, these feelings can potentially cause patients to face a dilemma in which they have to choose between authenticity and autonomy. My interpretation of this case will, in turn, point toward the most pressing questions that arise from the issues surrounding authenticity and alienation in relation to DBS. I will describe the case, offer an overlooked interpretation that is an alternative to the one supported in the literature and defend it. I will then use my interpretation to raise and discuss general issues about possible conflicts between autonomy and authenticity and why they are ethically important. This will be done in the hope that these concerns will facilitate future discussion of this issue in the ethical discussion of DBS.
A patient's dilemma: choosing between mental competence and well-being
In a recent article in the Dutch medical journal Nederlandse Tijdschrift voor Geneeskunde, Leentjens et al7 report a case study, which I shall refer to as ‘the case of the Dutch patient’, in which a 62-year-old patient with Parkinson's disease faced a dilemma as a result of DBS. The patient who had a brain pacemaker implant and was under treatment with DBS, developed, along with other psychological and social problems, a permanent manic state that could not be controlled via medication. This case study is paradigmatic of the frequent personality-changing side effects that patients experience as a result of DBS implants. It raises the issues of autonomy, accountability, personal identity and quality of life as they have been discussed in the literature.8–11 But, significantly for our purposes, it also points toward the importance of the notion of authenticity in our considerations of DBS.
When the patient's mania became so severe that he ran up excessive debts, had an altercation with the police and eventually faced hospitalisation in a psychiatric clinic, his physicians decided to ask the patient whether they should deactivate his implant. When the device was in the switched-on mode, the patient was in a manic state. In this mode, he was not believed to be accountable and rational, meaning, unable to give informed consent. In the terminology of medical ethics, he was considered to be mentally incompetent and not legally accountable, that is, he was not an autonomous agent. In what follows, I will use the term ‘autonomous’ as a synonym to ‘mentally competent’ in terms of decision making and the ability to give informed consent. By contrast, when the device was in the switched-off mode, the patient was believed to be ‘normal’, meaning, he possessed a rational and accountable state of mind in which he was able to autonomously make rational decisions. At the same time, however, in this state, he was physically disabled, bedridden and dependent on others; he was severely depressed and suffered physically and mentally from the burden of his disease.7
Eventually, the physicians agreed to ask the patient while he was in the switched-off mode (the autonomous mode in which he was believed to be accountable and rational), whether the device should be deactivated. Additionally, he was asked to fill out an advance directive about the future, stating that he agreed to be kept under psychiatric care for the rest of his life if he kept the device activated.
The patient decided to have his implant permanently left switched on, and to spend the rest of his life in a psychiatric clinic—in a decent bodily condition, but in a permanent manic state.7
In what follows, I will provide an interpretation of the Dutch case study. In doing so, I will draw inferences from other case studies that I regard as analogous to this one in relevant respects: the aforementioned Schüpbach cases, a study by Munhoz et al (ref.12, cit. in ref.13) and the autobiography by Helmut Dubiel, an academic who gets treated by DBS and reports about his feelings of alienation under treatment.14 I use the content of the patients’ statements in these other case studies to shed light on the Dutch case, primarily resorting to Schüpbach's material.
Prima facie, the Dutch case seems to warrant the following interpretation. The patient opted for the switched-on mode for two reasons: first, being under stimulation improved his bodily state and allowed him to avoid physical suffering and dependence on the care of others. Second, the manic state presumably provided the patient with pleasant feelings. In the switched-on mode, he could avoid the depression he experienced in the switched-off mode, whereas in the switched-off state he would have had to endure not only physical but also mental suffering for the rest of his life. In his article ‘Stimulating brains, altering minds’, Walter Glannon discusses the example of the Dutch patient as well. In his interpretation, the patient made his choice on ‘quality of life grounds’ (ref.15, p 290). Glannon writes: ‘Assuming that he had the capacity to compare his two states, loss of motor control was worse than mania. He chose to continue DBS because the net benefit of being on the stimulator, was greater than being off it. It was the lesser of two evils’ (ref.15, p 290; cf. also ref.16, p 3).
Understood in this way, the patient faced a dilemma: he had to choose between feeling well and being mentally competent. And, ultimately, by deciding for his well-being, the patient sacrificed his mental competence and autonomy.
We know little about the Dutch case, and cannot fully decide whether Glannon's interpretation is the correct one or not. However, there is considerable independent evidence suggesting that the interpretation that I will provide in what follows is at least equally plausible. This interpretation has so far been overlooked, because there is a tendency to focus on quality of life at the expense of autonomy and authenticity. Moreover, this interpretation raises neglected general issues about possible conflicts between autonomy and authenticity in DBS patients. More generally, these issues are of interest even independently of this particular case.
Authenticity or autonomy? A philosophical reinterpretation
One could wonder whether Walter Glannon is right in stating that the Dutch patient faces a dilemma between mental competence and quality of life (ref. 15, p 290; cf. also ref. 16, p 3). In his interpretation, the Dutch patient opts for permanent stimulation on qualify-of-life grounds—sacrificing his mental competence for his well-being.
However, Glannon's interpretation is contested by cases where people choose authenticity even at a cost to hedonic well-being. For instance, take Peter Kramer's patient Philip, in his Listening to Prozac.5 Philip's mood improves under the intake of Prozac, but he feels inauthentic in the pleasant state and therefore stops the treatment. This is one example that shows that a person's preferences for authenticity can even be more fundamental than hedonic ones. In some cases, people are willing to sacrifice well-being in order to remain authentic.
In light of this, it seems likely that a more weighty counter-consideration was behind the Dutch patients’ choice as well. A closer look reveals that there is another philosophical interpretation of this case available that runs deeper than a prima facie reading focused on quality of life, an interpretation that emphasises the patient's experience of authenticity. This interpretation is guided by other case studies that I regard as analogous to this one in relevant respects.3 ,12 ,14 In these studies, we find numerous patients under stimulation using the language of authenticity and alienation (refs. 3, 6, cf. also ref.16, p 2).
For instance, one of the patients in the Schüpbach study made it clear that he feels authentic under stimulation and regards his switched-off mode as alienating.2 Further evidence in the literature can be found where patients describe their switched-on modes under DBS as authentic. For instance, Carter et al (2010),13 with reference to a study by Munhoz et al,12 report on a patient treated with dopamine replacement therapy (DRT) that works on the dopaminergic system in a similar way as DBS does, who under medication indulged in sexual practices that he had not pursued before. Once the medication was stopped, the patient reported that he had these desires prior to DRT treatment, but had been ‘too embarrassed to act on them’. As the authors put it, the medication allowed the patient to ‘realise these desires’. As they write, ‘after a change in his medication’, he ‘later on expressed regret at his behaviour’. Nevertheless, according to them, this exemplifies a case ‘in which DRT induces behaviour that individuals claim are authentic’.12
This evidence together with the cases of Prozac-induced felt authenticity described by Peter Kramer,5 makes one wonder whether these results might be relevant to the Dutch patient. One could ask: might the Dutch patient have felt authentic in the switched-on mode and alienated when switched off, similar to the other cases just considered?
Maybe it was even this felt authenticity that motivated the Dutch patient to stay on stimulation? It is at least a possibility that he could have decided to stay switched-on because he felt authentic in the stimulated state and because he regarded his unstimulated life as alienating. The authors of the Dutch study do not report any account of the patient's feelings; so here we can only speculate. In one of Schüpbach's cases, a DBS patient says: ‘During all these years of illness, I was asleep. Now I am stimulated, stimulated to lead a different life’.3 Imagine that, in the same vein, the Dutch patient had said or thought something like the following: ‘The person that drives his car too fast, that leads a promiscuous life and that runs into debts is really me! In my previous life, before stimulation, I did not dare to do such unreasonable things. I lived a well-adapted life—a life which I now see was never really mine. But now, I have the chance to be who I really am’.
If one, still on the basis of an assumed analogy with the Schüpbach cases, accepts this as a possible narrative for the Dutch patient, a new interpretation of his dilemma arises. On the prima facie reading, the patient had to choose between bodily and psychological well-being on the one hand, and autonomy, understood as mental competence, on the other. If, however, he really felt authentic under stimulation, he faced a different dilemma: he had to choose between being autonomous, that is, mentally competent in the switched-off mode, and feeling authentic, albeit being manic, in the switched-on mode. To be both autonomous and authentic was not possible for him. In the authentic state, he is no longer able to make any mentally competent, autonomous decisions in the future, and vice versa, when being mentally competent, he does not feel authentic. In this light, one could redescribe his dilemma as a dilemma between autonomy and authenticity.
Having said this, it is important to note that ‘authenticity’ is not used as an ontological term here, such as, for example, ‘authenticity proper’ or ‘actual authenticity’, but rather in the sense of ‘felt authenticity’. In this, I follow Kraemer17 who has argued that in the case of patients taking the antidepressant Prozac, we should primarily focus on subjectively felt authenticity rather than on ‘ontological’ concepts. This is to avoid resorting to unprovable metaphysical assumptions in the discourse about authenticity.6
Is ‘authenticity’ the new ‘autonomy’ in neuroethics?
The Dutch case, as construed on the authenticity interpretation, raises at least three ethical questions. Is authenticity as ethically relevant as autonomy? Are there any patients’ rights and, accordingly, any duties for healthcare professionals that can be inferred from patients’ feelings of authenticity under DBS? In the case of a conflict between authenticity and autonomy, is authenticity always overriding?
Even if one recognises that authenticity is important for some patients, a patient's mental competence, and thus his or her autonomy is still a key capacity when it comes to decision making and informed consent. In the Dutch case, this is presumably why the doctors have the patient make his decision in the switched-off mode in which he is mentally competent. In the Kantian as well as in the utilitarian tradition, autonomy counts as a value. One can conclude that when it comes to decision making, such as in the case of the Dutch patient, then healthcare professionals should primarily focus on autonomy and give less weight to questions of authenticity. Otherwise, the patient's consent would not be ethically valid. In this sense, the answer to the question raised in the heading of the section is ‘no’: authenticity is not the new autonomy in neuroethics, at least not in the assessment of a patient's decision-making capacities. Under these circumstances, it is still autonomy that is of primary value, not authenticity.
However, on the interpretation of the Dutch case I offered above, felt authenticity seems to play a pre-eminent role for the patient. It is his felt preference and a paramount value. Here, the value of authenticity competes with the value of autonomy in the sense that the patient has to decide between them. In a mentally competent state, the patient decides to remain in a mentally incompetent state for the rest of his life in which he feels authentic. For the Dutch patient, the value of authenticity seems to outweigh the one of autonomy.
The second question is whether there are any patients’ rights and, accordingly, any duties for healthcare professionals that can be inferred from patients’ feelings of authenticity under DBS. From what has been said, it becomes clear that patients’ felt authenticity deserves respect as a felt preference. It is a value that some patients may give the preference to over autonomy. However, it would be too fast to infer any general claims from a single case, even if it is backed up by other studies. With respect to the normative status of feelings of authenticity as felt preferences, no immediate normative consequences arise. Accordingly, no special patient rights and duties of healthcare professionals can be derived from them right away. The insight that authenticity matters for some patients seems to be primarily of heuristic value: understanding feelings of authenticity is of importance for healthcare professionals in order to better understand their patients’ decisions (cf. ref. 2). Additionally, it is crucial for medical ethicists in order to enable them to develop new theories about what matters in a future ethics of DBS.
The third question is whether, in the case of a conflict between authenticity and autonomy, authenticity is practically over-riding? What should we do if someone feels authentic in a mental state that we as a society find problematic? As we saw in the case of the Dutch patient, sometimes feeling authentic is connected with asocial behaviour, which puts the patient and others at risk. Especially in cases such as the Dutch one, healthcare professionals might be justified in weighing the value of safety higher than the one of authenticity. Whenever a patient runs the risk of severely damaging others and himself, healthcare professionals must restrict his or her drive for authenticity. Understood this way, felt authenticity is not everything, that is, it is not necessarily of pre-eminent significance when it clashes with other basic values, such as, for example, safety.
As is evidenced by this discussion, questions surrounding authenticity and alienation should play an important role in our considerations of the ethics of DBS. DBS can change a patient's mental state in a groundbreaking way. In cases like that of the Dutch patient (at least as it is construed in this paper), patients can be faced with a choice between the values of autonomy and authenticity. Healthcare professionals and medical ethicists need to determine which of them should be given more normative weight (cf. ref. 2).
In the Dutch case, authenticity seems to be of great value for the patient. In the end, he even opts for authenticity against autonomy. The conclusion the current paper draws from this interpretation is twofold. First, feelings of authenticity that can arise under treatment deserve respect as central preferences of some DBS patients, because they are closely connected to their self-understanding and are therefore of paramount value for them. Getting insight into their patients’ feelings of authenticity and alienation under treatment is of considerable heuristic value for healthcare professionals and ethicists. It can provide them with a better understanding of the motivation and treatment decisions of a patient and with a better basis for a more elaborate ethics of DBS (cf. also ref. 18).
Second, however, this does not imply that authenticity should be given equal weight or even more weight than autonomy by caregivers in all contexts. Rather, when it comes to the assessment of a patient's capacity for rational decision making, it is certainly autonomy understood as mental competence rather than feelings of authenticity that should be given more weight. In situations in which the patient endangers herself and others, the significance of autonomy as a guarantor of reasonable behaviour certainly normatively outweighs the one of a patient's feelings of authenticity.
These and similar problems that can arise in the context of DBS will become even more pressing in the future, as countries such as the USA have allowed the use of DBS for psychiatric disorders, such as depression, dystonia, and obsessive-compulsive disorders.19 One day DBS may even be used for enhancement purposes.20 In the past, problems relating to authenticity and alienation have been discussed in the context of psychopharmacological neurointerventions. Now it is time to raise them in the context of DBS as well.
I wish to thank Oliver Hallich, Alexander Bagattini, Samantha Materne and audiences in Dortmund and Utrecht as well as two anonymous referees for their most valuable comments.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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