Deepbrainstimulation has been of considerable interest to bioethicists, in large part because of the effects that the intervention can occasionally have on central features of the recipient’s personality. These effects raise questions regarding the philosophical concept of authenticity. In this article, we expand on our earlier work on the concept of authenticity in the context of deepbrainstimulation by developing a diachronic, value-based account of authenticity. Our account draws on both existentialist (...) and essentialist approaches to authenticity, and Laura Waddell Ekstrom’s coherentist approach to personal autonomy. In developing our account, we respond to Sven Nyholm and Elizabeth O’Neill’s synchronic approach to authenticity, and explain how the diachronic approach we defend can have practical utility, contrary to Alexandre Erler and Tony Hope’s criticism of autonomy-based approaches to authenticity. Having drawn a distinction between the authenticity of an individual’s traits and the authenticity of that person’s values, we consider how our conception of authenticity applies to the context of anorexia nervosa in comparison to other prominent accounts of authenticity. We conclude with some reflections on the prudential value of authenticity, and by highlighting how the language of authenticity can be invoked to justify covert forms of paternalism that run contrary to the value of individuality that seems to be at the heart of authenticity. (shrink)
Ethical evaluation of deepbrainstimulation as a treatment for Parkinson’s disease is complicated by results that can be described as involving changes in the patient’s identity. The risk of becoming another person following surgery is alarming for patients, caregivers and clinicians alike. It is one of the most urgent conceptual and ethical problems facing deepbrainstimulation in Parkinson’s disease at this time. In our paper we take issue with this problem on two (...) accounts. First, we elucidate what is meant by “becoming another person” from a conceptual point of view. After critically discussing two broad approaches we concentrate on the notion of “individual identity” which centers on the idea of “core attitudes”. Subsequently we discuss several approaches to determine what distinguishes core attitudes from those that are more peripheral. We argue for a “foundational-function model” highlighting the importance of specific dependency relations between these attitudes. Our second aim is to comment on the possibility to empirically measure changes in individual identity and argue that many of the instruments now commonly used in selecting and monitoring DBS-patients are inappropriate for this purpose. Future research in this area is advised combining a conceptual and an empirical approach as a basis of sound ethical appraisal. (shrink)
One of the topics that often comes up in ethical discussions of deepbrainstimulation (DBS) is the question of what impact DBS has, or might have, on the patient’s self. This is often understood as a question of whether DBS poses a “threat” to personal identity, which is typically understood as having to do with psychological and/or narrative continuity over time. In this article, we argue that the discussion of whether DBS is a “threat” to continuity (...) over time is too narrow. There are other questions concerning DBS and the self that are overlooked in discussions exclusively focusing on psychological and/or narrative continuity. For example, it is also important to investigate whether DBS might sometimes have a positive (e.g. a rehabilitating) effect on the patient’s self. To widen the discussion of DBS, so as to make it encompass a broader range of considerations that bear on DBS’s impact on the self, we identify six features of the commonly used concept of a person’s “true self”. We apply these six features to the relation between DBS and the self. And we end with a brief discussion of the role DBS might play in treating otherwise treatment-refractory anorexia nervosa. This further highlights the importance of discussing both continuity over time and the notion of the true self. (shrink)
The goal of this article is to shed light on DeepBrainStimulation (DBS) postoperative suicidality risk factors within Treatment Resistant Depression (TRD) patients, in particular by focusing on the ethical concern of enrolling patient with history of self-estrangement, suicide attempts and impulsive–aggressive inclinations. In order to illustrate these ethical issues we report and review a clinical case associated with postoperative feelings of self-estrangement, self-harm behaviours and suicide attempt leading to the removal of DBS devices. Could prospectively (...) identifying and excluding patients with suicidality risk factors from DBS experimental trials—such as history of self-estrangement, suicide attempts and impulsive–aggressive inclinations—lead to minimizing the risk of suicidality harm? (shrink)
Questions about the nature of self and self-consciousness are closely aligned with questions about the nature of autonomy. These concepts have deep roots in traditional philosophical discussions that concern metaphysics, epistemology and ethics. They also have direct relevance to practical considerations about informed consent in medical contexts. In this paper, with reference to understanding specific side effects of deepbrainstimulation treatment in cases of, for example, Parkinson’s Disease, Obsessive Compulsive Disorder, and Major Depressive Disorder, I’ll (...) argue that it is best to frame discussions of informed consent in terms of relational autonomy and a pattern theory of self. (shrink)
Although philosophers have explored several connections between neuroscience and moral responsibility, the issue of how real-world neurological modifications, such as DeepBrainStimulation, impact moral responsibility has received little attention. In this article, we draw on debates about the relevance of history and manipulation to moral responsibility to argue that certain kinds of neurological modification can diminish the responsibility of the agents so modified. We argue for a historicist position - a version of the history-sensitive reflection view (...) - and defend that account against a rival, relational view of responsibility. We conclude that DBS can, under certain conditions, diminish responsibility, and explore the circumstances under which this might be so. We conclude by suggesting that philosophical debates about moral responsibility, manipulation, and history have greater practical relevance than is sometimes thought, and that attention to practical cases can help inform and deepen this body of scholarship. (shrink)
In this paper, we engage in dialogue with Jonathan Pugh, Hannah Maslen, and Julian Savulescu about how to best interpret the potential impacts of deepbrainstimulation on the self. We consider whether ordinary people’s convictions about the true self should be interpreted in essentialist or existentialist ways. Like Pugh et al., we argue that it is useful to understand the notion of the true self as having both essentialist and existentialist components. We also consider two ideas (...) from existentialist philosophy – Jean-Paul Sartre and Simone de Beauvoir’s ideas about “bad faith” and “ambiguity” – to argue that there can be value to patients in regarding themselves as having a certain amount of freedom to choose what aspects of themselves should be considered representative of their true selves. Lastly, we consider the case of an anorexia nervosa-patient who shifts between conflicting mind-sets. We argue that mind-sets in which it is easier for the patient and his or her family to share values can plausibly be considered to be more representative of the patient’s true self, if this promotes a well-functioning relationship between the patient and the family. However, we also argue that families are well-advised to give patients room to figure out what such shared values mean to them, since it can be alienating for patients if they feel that others try to impose values on them from the outside. (shrink)
Despite growing evidence that a significant number of patients living with Parkison’s disease experience neuropsychiatric changes following DeepBrainStimulation treatment, the phenomenon remains poorly understood and largely unexplored in the literature. To shed new light on this phenomenon, we used qualitative methods grounded in phenomenology to conduct in-depth, semi-structured interviews with 17 patients living with Parkinson’s Disease who had undergone DBS. Our study found that patients appear to experience postoperative DBS-induced changes in the form of self-estrangement. (...) Using the insights from patients’ subjective perceptions of postoperative self-change provides a potent explanation of potential DBS-induced self-estrangement. (shrink)
DeepBrainStimulation (DBS) is a relatively new, experimental treatment for patients suffering from treatment-refractory Obsessive Compulsive Disorder (OCD). The effects of treatment are typically assessed with psychopathological scales that measure the amount of symptoms. However, clinical experience indicates that the effects of DBS are not limited to symptoms only: patients for instance report changes in perception, feeling stronger and more confident, and doing things unreflectively. Our aim is to get a better overview of the whole variety (...) of changes that OCD patients experience during DBS treatment. For that purpose we conducted in-depth, semi-structured interviews with 18 OCD patients. In this paper, we present the results from this qualitative study.We list the changes grouped in four domains: with regard to (a) person, (b) (social) world, (c)characteristics of person-world interactions, and (d) existential stance. We subsequently provide an interpretation of these results. In particular, we suggest that many of these changes can be seen as different expressions of the same process; namely that the experience of anxiety and tension gives way to an increased basic trust and increased reliance on one’s abilities. We then discuss the clinical implications of our findings, especially with regard to properly informing patients of what they can expect from treatment, the usefulness of including CBT in treatment, and the limitations of current measures of treatment success. We end by making several concrete suggestions for further research. (shrink)
This paper explores the impacts of neurological intervention on selfhood with reference to recipients’ claims about changes to their self-understanding following DeepBrainStimulation for treatment of Parkinson’s Disease. In the neuroethics literature, patients’ claims such as: “I don’t feel like myself anymore” and “I feel like a machine”, are often understood as expressing threats to identity. In this paper I argue that framing debates in terms of a possible threat to identity—whether for or against the proposition, (...) is mistaken and occludes what is ethically salient in changes from DBS. Rather, by adopting a relational narrative approach to identity and autonomy, I show that the ethically salient issue from DBS is impacts on autonomous agency—whether one’s actions and beliefs are one’s own, and how DBS may hinder, or foster, embodied, relational autonomy competences. This approach recognizes that if sufficiently significant, impacts on autonomy competences may pose a threat to one’s ability to contribute to the process of authoring one’s own life and so pose a threat to identity formation. I argue this approach resolves the confusion in the literature about whether and how DBS threatens identity and provides a complex picture of how DBS may affect selfhood by disrupting narrative identity formation and revision, distorting agency and/or undermining autonomy. (shrink)
People suffering from Obsessive-Compulsive Disorder (OCD) do things they do not want to do, and/or they think things they do not want to think. In about 10 percent of OCD patients, none of the available treatment options is effective. A small group of these patients is currently being treated with deepbrainstimulation (DBS). Deepbrainstimulation involves the implantation of electrodes in the brain. These electrodes give a continuous electrical pulse to the (...)brain area in which they are implanted. It turns out that patients may experience profound changes as a result of DBS treatment. It is not just the symptoms that change; patients rather seem to experience a different way of being in the world. These global effects are insufficiently captured by traditional psychiatric scales, which mainly consist of behavioural measures of the severity of the symptoms. In this article we aim to capture the changes in the patients’ phenomenology and make sense of the broad range of changes they report. For that we introduce an enactive, affordance-based model that fleshes out the dynamic interactions between person and world in four aspects. The first aspect is the patients’ experience of the world. We propose to specify the patients’ world in terms of a field of affordances, with the three dimensions of broadness of scope (‘width’ of the field), temporal horizon (‘depth’), and relevance of the perceived affordances (‘height’). The second aspect is the person-side of the interaction, that is, the patients’ self-experience, notably their moods and feelings. Thirdly, we point to the different characteristics of the way in which patients relate to the world. And lastly, the existential stance refers to the stance that patients take towards the changes they experience: the second-order evaluative relation to their interactions and themselves. With our model we intend to specify the notion of being in the world in order to do justice to the phenomenological effects of DBS treatment. (shrink)
There is preliminary evidence, from case reports and investigational studies, to suggest that DeepBrainStimulation could be used to treat some patients with Anorexia Nervosa. Although this research is at an early stage, the invasive nature of the intervention and the vulnerability of the potential patients are such that anticipatory ethical analysis is warranted. In this paper, we first show how different treatment mechanisms raise different philosophical and ethical questions. We distinguish three potential mechanisms alluded to (...) in the neuroscientific literature, relating to desire, control, and emotion, respectively. We explain why the precise nature of the mechanism has important implications for the patient’s autonomy and personal identity. In the second part of the paper, we consider practical dimensions of offering DBS to patients with AN in certain cases. We first discuss some limited circumstances where the mere offering of the intervention might be perceived as exerting a degree of coercive pressure that could serve to undermine the validity of the patient’s consent. Finally, we consider the implications of potential effects of DBS for the authenticity of the patient’s choice to continue using stimulation to ameliorate their condition. (shrink)
While deepbrainstimulation (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. (shrink)
Deepbrainstimulation to different sites allows interfering with dysfunctional network function implicated in major depression. Because a prominent clinical feature of depression is anhedonia--the inability to experience pleasure from previously pleasurable activities--and because there is clear evidence of dysfunctions of the reward system in depression, DBS to the nucleus accumbens might offer a new possibility to target depressive symptomatology in otherwise treatment-resistant depression. Three patients suffering from extremely resistant forms of depression, who did not respond to (...) pharmacotherapy, psychotherapy, and electroconvulsive therapy, were implanted with bilateral DBS electrodes in the nucleus accumbens. Stimulation parameters were modified in a double-blind manner, and clinical ratings were assessed at each modification. Additionally, brain metabolism was assessed 1 week before and 1 week after stimulation onset. Clinical ratings improved in all three patients when the stimulator was on, and worsened in all three patients when the stimulator was turned off. Effects were observable immediately, and no side effects occurred in any of the patients. Using FDG-PET, significant changes in brain metabolism as a function of the stimulation in fronto-striatal networks were observed. No unwanted effects of DBS other than those directly related to the surgical procedure were observed. Dysfunctions of the reward system--in which the nucleus accumbens is a key structure--are implicated in the neurobiology of major depression and might be responsible for impaired reward processing, as evidenced by the symptom of anhedonia. These preliminary findings suggest that DBS to the nucleus accumbens might be a hypothesis-guided approach for refractory major depression. (shrink)
Under the current Mental Health Act of England and Wales, it is lawful to perform deepbrainstimulation in the absence of consent and independent approval. We argue against the Care Quality Commission's preferred strategy of addressing this problematic issue, and offer recommendations for deepbrainstimulation-specific provisions in a revised Mental Health Act.
Deepbrainstimulation (DBS) is optimistically portrayed in contemporary media. This already happened with psychosurgery during the first half of the twentieth century. The tendency of popular media to hype the benefits of DBS therapies, without equally highlighting risks, fosters public expectations also due to the lack of ethical analysis in the scientific literature. Media are not expected (and often not prepared) to raise the ethical issues which remain unaddressed by the scientific community. To obtain a more (...) objective portrayal of DBS in the media, a deeper collaboration between the science community and journalists, and particularly specialized ones, must be promoted. Access to databases and articles, directly or through science media centers, has also been proven effective in increasing the quality of reporting. This article has three main objectives. Firstly, to explore the past media coverage of leukotomy, and to examine its widespread acceptance and the neglect of ethical issues in its depiction. Secondly, to describe how current enthusiastic coverage of DBS causes excessive optimism and neglect of ethical issues in patients. Thirdly, to discuss communication models and strategies to enhance media and science responsibility. (shrink)
This paper discusses the use of deepbrainstimulation for the treatment of neurological and psychiatric disorders in children. At present, deepbrainstimulation is used to treat movement disorders in children and a few cases of deepbrainstimulation for psychiatric disorders in adolescents have been reported. Ethical guidelines on the use of deepbrainstimulation in children are therefore urgently needed. This paper focuses on the decision-making (...) process, and provides an ethical framework for (future) treatment decisions in pediatric deepbrainstimulation. I defend a shared decision-making model in case of deepbrainstimulation for neurological and psychiatric disorders in children. To protect the vulnerable child patient, a dual consent process is needed where parents or parental guardians give their consent, and the child gives his/her assent. (shrink)
Although being generally safe, the use of DeepBrainStimulation has been associated with a significant number of patients experiencing postoperative psychological and neurological harm within experimental trials. A proportion of these postoperative severe adverse effects have lead to the decision to medically prescribe device deactivation or removal. However, there is little debate in the literature as to what is in the patient’s best interest when device removal has been prescribed; in particular, what should be the conceptual (...) approach to ethically guide the decision to remove or maintain implants. The purpose of this article is to examine the ethical issues raised when patients refuse brain device explantation despite medical prescription. In order to illustrate these issues, we report and discuss a clinical case involving a patient suffering from treatment resistant depression who experienced forms of postoperative self-estrangement, as well as suicidal attempts, but who resists giving consent to device explantation. (shrink)
In this article, I explore select case studies of Parkinson patients treated with deepbrainstimulation in light of the notions of alienation and authenticity. While the literature on DBS has so far neglected the issues of authenticity and alienation, I argue that interpreting these cases in terms of these concepts raises new issues for not only the philosophical discussion of neuro-ethics of DBS, but also for the psychological and medical approach to patients under DBS. In particular, (...) I suggest that the experience of alienation and authenticity varies from patient to patient with DBS. For some, alienation can be brought about by neurointerventions because patients no longer feel like themselves. But, on the other hand, it seems alienation can also be cured by DBS as other patients experience their state of mind as authentic under treatment and retrospectively regard their former lives without stimulation as alienated. 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. (shrink)
Case reports about patients undergoing DeepBrainStimulation (DBS) for various motor and psychiatric disorders - including Parkinson’s Disease, Obsessive Compulsive Disorder, and Treatment Resistant Depression - have sparked a vast literature in neuroethics. Questions about whether and how DBS changes the self have been at the fore. The present chapter brings these neuroethical debates into conversation with recent research in moral psychology. We begin in Section 1 by reviewing the recent clinical literature on DBS. In Section (...) 2, we consider whether DBS poses a threat to personal identity. In Section 3 we argue for engagement with recent empirical work examining judgements of when identity changes. We conclude in Section 4 by highlighting a range of ethical issues raised by DBS, including various cross-cultural considerations. (shrink)
This contribution aims at describing the experiences of DeepBrainStimulation as discussed on Internet forums. Since the 2000s, increasing attention has been paid to health practices associated with the use of the Internet, whether by medical professionals, public authorities or researchers in the social sciences. We know that Internet is used by patients with Parkinson’s disease, in order to discuss about their lived experiences. This contribution will present how these Internet users address the specific theme of (...) DBS. We will examine how their use and the information sharing associated to it participate in the “shaping” of the lived experience of deep cerebral stimulation. This contribution will be introduced by an analysis of the state-of-the-art in sociological and anthropological international research on the topic of “Internet health”. On the basis of this analysis, it will propose a framework to describe and understand the various uses of the web that are made to give an account of the experience of stimulation. The existence of collective mobilizations in Parkinson’s disease, an old Internet experience and media oppositions concerning certain antiparkinsonian drugs, are conditions which push us to question these themes concerning DBS. This paper is a description, for the first time, of roles played by the users of these Internet forums and the different online activities produced about DBS subject. In an ethnographic perspective, we had to imagine that we were an Internet user seeking patient experiences with this surgical procedure to understand these interactions about DBS. The main goal of this contribution is to describe the attention paid by users for medical information about DBS in the identity and self-help process. The interest of such an approach is to open an anthropological reflection on the place and the role of the medical representations in the testimonies of experience of the disease or the treatments. (shrink)
Gilles de la Tourette syndrome is a childhood neuropsychiatric disorder characterised by the presence of motor and vocal tics. Patients with malignant TS experience severe disease sequelae; risking morbidity and mortality due to tics, self-harm, psychiatric comorbidities and suicide. By definition, those cases termed ‘malignant’ are refractory to all conventional psychiatric and pharmacological regimens. In these instances, deepbrainstimulation may be efficacious. Current 2015 guidelines recommend a 6-month period absent of suicidal ideation before DBS is offered (...) to patients with TS. We therefore wondered whether it may be ethically justifiable to offer DBS to a minor with malignant TS. We begin with a discussion of non-maleficence and beneficence. New evidence suggests that suicide risk in young patients with TS has been underestimated. In turn, DBS may represent an invaluable opportunity for children with malignant TS to secure future safety, independence and fulfilment. Postponing treatment is associated with additional risks. Ultimately, we assert this unique risk-benefit calculus justifies offering DBS to paediatric patients with malignant TS. A multidisciplinary team of clinicians must determine whether DBS is in the best interest of their individual patients. We conclude with a suggestion for future TS-DBS guidelines regarding suicidal ideation. The importance of informed consent and assent is underscored. (shrink)
Timothy Brown invites us to think about the ways in which people who are being treated with deepbrainstimulation might come to interact with their devices. He suggests that a framework of relational agency can help us to understand both the benefits and the challenges of DBS because DBS systems are, while not full fellow agents, more than mere props; users must sometimes "negotiate and collaborate with their stimulators". We agree that it is important to develop (...) conceptual frameworks that both do justice to the ways that individuals respond to using DBS and give them new ways to think about the device, their relationship to it, and its role in their lives. In this commentary, we consider three... (shrink)
Gilbert et al. have raised important questions about the empirical grounding of neuroethical analyses of the apparent phenomenon of DeepBrainStimulation ‘causing’ personality changes. In this paper, we consider how to make neuroethical claims appropriately calibrated to existing evidence, and the role that philosophical neuroethics has to play in this enterprise of ‘evidence-based neuroethics’. In the first half of the paper, we begin by highlighting the challenges we face in investigating changes to PIAAAS following DBS, explaining (...) how different trial designs may be of different degrees of utility, depending on how changes to PIAAAS following DBS are manifested. In particular, we suggest that the trial designs Gilbert et al. call for may not be able to tell us whether or not DBS directly causes changes to personality. However, we suggest that this is not the most significant question about this phenomenon; the most significant question is whether these changes should matter morally, however they are caused. We go on to suggest that neuroethical analyses of novel neuro-interventions should be carried out in accordance with the levels of evidence hierarchy outlined by the Centre for Evidence-Based Medicine, and explain different ways in which neuroethical analyses of changes to PIAAAS can be evidence-based on this framework. In the second half of the paper, we explain how philosophical neuroethics can play an important role in contributing to mechanism-based reasoning about potential effects on PIAAAS following DBS, a form of evidence that is also incorporated into the CEBM levels of evidence hierarchy. (shrink)
Ethical analyses of the effects of neural interventions commonly focus on changes to personality and behavior, interpreting these changes in terms of authenticity and identity. These phenomena have led to debate among ethicists about the meaning of these terms for ethical analysis of such interventions. While these theoretical approaches have different criteria for ethical significance, they agree that patients’ reports are concerning because a sense of self is valuable. In this paper, I question this assumption. I propose that the Buddhist (...) theory of no‐self offers a novel approach to making ethical sense of patients’ claims following deepbrainstimulation. This alternative approach is based on the value of insight into patterns of cause and effect among mental states and actions. (shrink)
Deepbrainstimulation is an invasive technique designed to stimulate certain deepbrain regions for therapeutic purposes and is currently used mainly in patients with neurodegenerative disorders, such as Parkinson’s disease. However, DBS is also used increasingly for other experimental applications, such as the treatment of psychiatric disorders, weight reduction. Apart from its therapeutic potential, DBS can cause severe adverse effects, some that might also have a significant impact on the patient’s personality and autonomy by (...) the external stimulation of DBS which effects lie beyond the individual’s control and free will. The article’s purpose is to outline the procedures of DBS currently used in therapeutic and experimental applications and to discuss the ethical concerns regarding this procedure. It will address the clinical benefit-risk-ratio, the particular ethics of research in this field, and the ethical issues raised by affecting a patient’s or an individual’s personality and autonomous behaviour. Moreover, a potential ethical guideline, the Ulysses contract is discussed for the field of clinical application as well as the question of responsibility. (shrink)
Deepbrainstimulation is an effective treatment for the debilitating motor symptoms of Parkinson’s disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not necessarily experienced the improvements in quality of life that would be expected, due in large part to what have been described as the ‘psychosocial’ impacts of DBS. The premise of this paper is that, in order to realise the full potential of DBS and similar interventions, clinical services (...) need to be arranged in such a way that these psychosocial dimensions are recognised and managed. Our starting point is that the psychosocial effects of DBS ‘in the field’ present us with analytically-useful disruptions: they disturb and foreground deeply held assumptions relating to the individual, health and its treatment, and which in a crude form manifest as the myth of technological solutionism within health care. Drawing on scholarship in medical sociology and science and technology studies, we argue that DBS brings to the fore the relational dimensions of personhood, and demonstrates the emotional and social turmoil that can result if the relational dimensions of personhood are ignored by clinical services. In light of this, we argue that DBS should be implemented within a regime of care. Drawing on ethnographic research of a paediatric DBS clinical service, we provide an example of a regime of care, and conclude by reflecting on what other DBS services might learn from this paediatric service. (shrink)
Background -/- Innovative neurosurgical treatments present a number of known risks, the natures and probabilities of which can be adequately communicated to patients via the standard procedures governing obtaining informed consent. However, due to their novelty, these treatments also come with unknown risks, which require an augmented approach to obtaining informed consent. -/- Objective -/- This paper aims to discuss and provide concrete procedural guidance on the ethical issues raised by serious unexpected complications of novel deepbrain (...) class='Hi'>stimulation treatments. -/- Approach -/- We illustrate our analysis using a case study of the unexpected development of recurrent stereotyped events in patients following the use of deepbrainstimulation (DBS) to treat severe chronic pain. Examining these unexpected complications in light of medical ethical principles, we argue that serious complications of novel DBS treatments do not necessarily make it unethical to offer the intervention to eligible patients. However, the difficulty the clinician faces in determining whether the intervention is in the patient's best interests generates reasons to take extra steps to promote the autonomous decision making of these patients. -/- Conclusion and recommendations -/- We conclude with clinical recommendations, including details of an augmented consent process for novel DBS treatment. (shrink)
IntroductionAs deepbrainstimulation has shifted to being used earlier during Parkinson’s disease, data is lacking regarding patient specific attitudes, preferences, and factors which may influence the timing of and decision to proceed with DBS in the United States. This study aims to identify and compare attitudes and preferences regarding the earlier use of DBS in Parkinson’s patients who have and have not undergone DBS.MethodsWe developed an online survey concerning attitudes about DBS and its timing in PD. (...) The survey was distributed nationally in the United States via the Michael J. Fox Foundation Trial Finder, the American Parkinson Disease Association flyers, and as a link on the Parkinson Alliance website. Differences in responses between PD DBS and non-DBS patients were assessed.ResultsA total of 445 patients with PD met eligibility criteria for the survey of which 160 self-identified as having undergone DBS. Fifty-five percent of non-DBS patients believed that DBS for PD should only be considered after all medication options have been tried. Patients favoring early DBS had fewer concerns regarding the surgery than those favoring later DBS.ConclusionOur findings highlight a variety of important considerations and concerns patients have regarding DBS and its timing. These viewpoints are important aspects of shared decision-making, as they help to identify patients’ preferences, values, and goals, which should enable providers to better navigate, with their patients, the decision path for therapeutic options to consider. (shrink)
Deepbrainstimulation has been regarded as an efficient and safe treatment for Parkinson’s disease since being approved by the Food and Drug Administration in 1997. It is estimated that more than 150 000 patients have been implanted, with a forecasted rapid increase in uptake with population ageing. Recent longitudinal follow-up studies have reported a significant increase in postoperative survival rates of patients with PD implanted with DBS as compared with those not implanted with DBS. Although DBS (...) tends to increase life expectancy for most patients with PD, this medical benefit does not come without attendant negative consequences. For example, emerging forms of iatrogenic harms are sometimes induced—harms which were not initially expected when clinicians proposed neurosurgery and patients or their guardians consented to the treatment. We report and discuss the clinical case of a patient who was implanted with DBS more than 20 years ago and is now experiencing unexpected stages of PD. This case illustrates how extending the life span without improving quality of life may introduce a burden of harms for patients and families. As well, this case shows why we should prepare for the expanding numbers of PD-implanted patients experiencing a gain of longevity but with severe stages of disease leading to diminution in quality of life. This newly observed effect of DBS treatment requires us to explore ethical questions related to iatrogenic harms, informed consent, end of life and caregivers’ burden. (shrink)
This article explores the notion of the dislocated self following deepbrainstimulation (DBS) and concludes that when personal identity is understood in dynamic, narrative, and relational terms, the claim that DBS is a threat to personal identity is deeply problematic. While DBS may result in profound changes in behaviour, mood and cognition (characteristics closely linked to personality), it is not helpful to characterize DBS as threatening to personal identity insofar as this claim is either false, misdirected (...) or trivially true. The claim is false insofar as it misunderstands the dynamic nature of identity formation. The claim is misdirected at DBS insofar as the real threat to personal identity is the discriminatory attitudes of others towards persons with motor and other disabilities. The claim is trivially true insofar as any dramatic event or experience integrated into one’s identity-constituting narrative could then potentially be described as threatening. From the perspective of relational personal identity, when DBS dramatically disrupts the narrative flow, this disruption is best examined through the lens of agency. For illustrative purposes, the focus is on DBS for the treatment of Parkinson’s disease. (shrink)
Felicitas Kraemer draws on the experiences of patients undergoing deep-brainstimulation to propose two distinct and potentially conflicting principles of respect: for an individual's autonomy , and for their authenticity. I argue instead that, according to commonly-invoked justifications of respect for autonomy, authenticity is itself in part constitutive of an analysis of autonomy worthy of respect; Kraemer's argument thus highlights the shortcomings of practical applications of respect for autonomy that emphasise competence while neglecting other important dimensions of (...) autonomy such as authenticity, since it shows that competence alone cannot be interpreted as a reliable indicator of an individual's capacity for exercising autonomy. I draw from relational accounts to suggest how respect for a more expansive conception of autonomy might be interpreted for individuals undergoing DBS and in general. (shrink)
Deepbrainstimulation of the subthalamic nucleus is an effective treatment for the motor symptoms of movement disorders including Parkinson's Disease. Despite its therapeutic benefits, STN-DBS has been associated with adverse effects on mood and cognition. Specifically, apathy, which is defined as a loss of motivation, has been reported to emerge or to worsen following STN-DBS. However, it is often challenging to disentangle the effects of STN-DBSper sefrom concurrent reduction of dopamine replacement therapy, from underlying PD pathology (...) or from disease progression. To this end, pre-clinical models allow for the dissociation of each of these factors, and to establish neural substrates underlying the emergence of motivational symptoms following STN-DBS. Here, we performed a systematic analysis of rodent studies assessing the effects of STN-DBS on reward seeking, reward motivation and reward consumption across a variety of behavioral paradigms. We find that STN-DBS decreases reward seeking in the majority of experiments, and we outline how design of the behavioral task and DBS parameters can influence experimental outcomes. While an early hypothesis posited that DBS acts as a “functional lesion,” an analysis of lesions and inhibition of the STN revealed no consistent pattern on reward-related behavior. Thus, we discuss alternative mechanisms that could contribute to the amotivational effects of STN-DBS. We also argue that optogenetic-assisted circuit dissection could yield important insight into the effects of the STN on motivated behavior in health and disease. Understanding the mechanisms underlying the effects of STN-DBS on motivated behavior-will be critical for optimizing the clinical application of STN-DBS. (shrink)
'Brainjacking’ refers to the exercise of unauthorized control of another’s electronic brain implant. Whilst the possibility of hacking a Brain–Computer Interface has already been proven in both experimental and real-life settings, there is reason to believe that it will soon be possible to interfere with the software settings of the Implanted Pulse Generators that play a central role in DeepBrainStimulation systems. Whilst brainjacking raises ethical concerns pertaining to privacy and physical or psychological harm, (...) we claim that the possibility of brainjacking DBS raises particularly profound concerns about individual autonomy, since the possibility of hacking such devices raises the prospect of third parties exerting influence over the neural circuits underpinning the subject’s cognitive, emotional and motivational states. However, although it seems natural to assume that brainjacking represents a profound threat to individual autonomy, we suggest that the implications of brainjacking for individual autonomy are complicated by the fact that technologies targeted by brainjacking often serve to enhance certain aspects of the user’s autonomy. The difficulty of ascertaining the implications of brainjacking DBS for individual autonomy is exacerbated by the varied understandings of autonomy in the neuroethical and philosophical literature. In this paper, we seek to bring some conceptual clarity to this area by mapping out some of the prominent views concerning the different dimension of autonomous agency, and the implications of brainjacking DBS for each dimension. Drawing on three hypothetical case studies, we show that there could plausibly be some circumstances in which brainjacking could potentially be carried out in ways that could serve to enhance certain dimensions of the target’s autonomy. Our analysis raises further questions about the power, scope, and necessity of obtaining prior consent in seeking to protect patient autonomy when directly interfering with their neural states, in particular in the context of self-regulating closed-loop stimulation devices. (shrink)
The article proposes a theoretical model to account for changes in self due to DeepBrainStimulation. First, we argue that most existing models postulate a very narrow conception of self, and thus fail to capture the full range of potentially relevant DBS-induced changes. Second, building on previous work by Shaun Gallagher, we propose a modified ‘pattern-theory of self’, which provides a richer picture of the possible consequences of DBS treatment.
This contribution intends to explore patients’ lived experience, with a focus on the temporal dimension. On the basis of a qualitative study that led me to interview persons with Parkinson’s disease, caregivers, and medical professionals, I develop an empirical and philosophical investigation of the temporalities surrounding the implementation of deepbrainstimulation in Greece. I raise the issue of access to DBS medical care, and show how distinct temporalities are implied when the patients face such a matter: (...) that of linear time, linked with the medical discourse, the bureaucratic time linked to administrative and financial hurdles in the implementation and maintenance of DBS, and the technological time of the body/technology fusion. I consider initially the impact of technology and health care settings on the lived experience of patients and the enactment of multiple bodies which are interrelated with the social world. I then expand my analysis in order to show that this experience cannot be a solipsistic one, or specific to one physician/patient relationship. It is fully socially shaped. (shrink)
BackgroundThe preferable position of DeepBrainStimulation electrodes is proposed to be located in the dorsolateral subthalamic nucleus to improve general motor performance. The optimal DBS electrode localization for the post-operative improvement of balance and gait is unknown.MethodsIn this single-center, retrospective analyses, 66 Parkinson’s disease patients were assessed pre- and post-operatively by using MDS-UPDRS, freezing of gait score, Giladi’s gait and falls questionnaire and Berg balance scale. The clinical outcome was related to the DBS electrode coordinates in (...) x, y, z plane as revealed by image-based reconstruction. Binomial generalized linear mixed models with fixed-effect variables electrode asymmetry, parkinsonian subtype, medication, age class and clinical DBS induced changes were analyzed.ResultsSubthalamic nucleus-deepbrainstimulation improved all motor, balance and FoG scores in MED OFF condition, however there were heterogeneous results in MED ON condition. DBS electrode reconstructed coordinates impacted the responsiveness of axial symptoms. FoG and balance responders showed slightly more medially located STN electrode coordinates and less medio-lateral asymmetry of the electrode reconstructed coordinates across hemispheres compared to non-responders.ConclusionDeep brainstimulation electrode reconstructed coordinates, particularly electrode asymmetry on the medio-lateral axis affected the post-operative responsiveness of balance and FoG symptoms in PD patients. (shrink)
DeepBrainStimulation (DBS) is a treatment involving the implantation of electrodes into the brain. Presently, it is used for neurological disorders like Parkinson’s disease, but indications are expanding to psychiatric disorders such as depression, addiction and Obsessive Compulsive Disorder (OCD). Theoretically, it may be possible to use DBS for the enhancement of various mental functions. This article discusses a case of an OCD patient who felt very happy with the DBS treatment, even though her symptoms (...) were not reduced. First, it is explored if the argument that ‘doctors are not in the business of trading happiness’, as used by her psychiatrist to justify his discontinuation of the DBS treatment, holds. The relationship between enhancement and the goals of medicine is discussed and it is concluded that even though the goals of medicine do not set strict limits and may even include certain types of enhancement, there are some good reasons for limiting the kind of things doctors are required or allowed to do. Next, the case is discussed from the perspective of beneficence and autonomy. It is argued that making people feel good is not the same as enhancing their well-being and that it is unlikely—though not absolutely impossible—that the well-being of the happy OCD patient is really improved. Finally, some concerns regarding the autonomy of a request made under the influence of DBS treatment are considered. (shrink)
Deepbrainstimulation (DBS) is frequently described as a ‘reversible’ medical treatment, and the reversibility of DBS is often cited as an important reason for preferring it to brain lesioning procedures as a last resort treatment modality for patients suffering from treatment-refractory conditions. Despite its widespread acceptance, the claim that DBS is reversible has recently come under attack. Critics have pointed out that data are beginning to suggest that there can be non-stimulation-dependent effects of DBS. (...) Furthermore, we lack long-term data about other potential irreversible effects of neuromodulation. This has considerable normative implications for comparisons of DBS and brain lesioning procedures. Indeed, Devan Stahl and colleagues have recently argued that psychiatric DBS should be subject to the same legal safeguards as other forms of psychosurgery, supporting their position by forcibly criticising the claim that DBS is reversible. In this paper, I respond to these criticisms by first clarifying the descriptive and evaluative elements of the reversibility claim that supporters of DBS might invoke, and the different senses of ‘reversibility’ that we might employ in discussing the effects of medical procedures. I go on to suggest that it is possible to defend a nuanced version of the reversibility claim. To do so, I explain how DBS has some effects that are stimulation dependent in the short term, and argue that these effects can have significant normative implications for patient well-being and autonomy. I conclude that we should not abandon a nuanced version of the reversibility claim in the DBS debate. (shrink)
Deepbrainstimulation as investigational intervention for symptomatic relief from Alzheimer disease has generated big expectations. Our aim is to discuss the ethical justification of this research agenda by examining the underlying research rationale as well as potential methodological pitfalls. The shortcomings we address are of high ethical importance because only scientifically valid research has the potential to be ethical. We performed a systematic search on MEDLINE and EMBASE. We included 166 publications about DBS for AD into (...) the analysis of research rationale, risks and ethical aspects. Fifty-eight patients were reported in peer-reviewed journals with very mixed results. A grey literature search revealed hints for 75 yet to be published, potentially enrolled patients. The results of our systematic review indicate methodological shortcomings in the literature that are both scientific and ethical in nature. According to our analysis, research with human subjects was performed before decisive preclinical research was published examining the specific research question at stake. We also raise the concern that conclusions on the potential safety and efficacy have been reported in the literature that seem premature given the design of the feasibility studies from which they were drawn. In addition, some publications report that DBS for AD was performed without written informed consent from some patients, but from surrogates only. Furthermore, registered ongoing trials plan to enroll severely demented patients. We provide reasons that this would violate Art. 28 of the Declaration of Helsinki, because DBS for AD involves more than minimal risks and burdens, and because its efficacy and safety are not yet empirically established to be likely. Based on our empirical analysis, we argue that clinical research on interventions of risk class III should not be exploratory but grounded on sound, preclinically tested, and disease-specific a posteriori hypotheses. This also applies to DBS for dementia as long as therapeutic benefits are uncertain, and especially when research subjects with cognitive deficits are involved, who may foreseeably progress to full incapacity to provide informed consent during the required follow-up period. (shrink)
Although an invasive medical intervention, DeepBrainStimulation (DBS) has been regarded as an efficient and safe treatment of Parkinson’s disease for the last 20 years. In terms of clinical ethics, it is worth asking whether the use of DBS may have unanticipated negative effects similar to those associated with other types of psychosurgery. Clinical studies of epileptic patients who have undergone an anterior temporal lobectomy have identified a range of side effects and complications in a number (...) of domains: psychological, behavioural, affective and social. In many cases, patients express difficulty adjusting from being chronically ill to their new status as ‘treated’ or ‘seizure free’. This postoperative response adjustment has been described in the literature on epilepsy as the ‘Burden of Normality’ (BoN) syndrome. Most of the discussion about DBS postoperative changes to self is focused on abnormal side effects caused by the intervention (ie, hypersexuality, hypomania, etc). By contrast, relatively little attention is paid to the idea that successfully ‘treated’ individuals might experience difficulties in adjusting to becoming ‘normal’. The purpose of this paper is (1) to articulate the postoperative DBS psychosocial adjustment process in terms of the BoN syndrome, (2) to address whether the BoN syndrome illustrates that DBS treatment poses a threat to the patient’s identity, and (3) to examine whether the current framework for rehabilitation after DBS procedures should be updated and take into account the BoN syndrome as a postoperative self-change response. (shrink)
Despite technological innovations, clinical expertise remains the cornerstone of psychiatry. A clinical expert does not only have general textbook knowledge, but is sensitive to what is demanded for the individual patient in a particular situation. A method that can do justice to the subjective and situation-specific nature of clinical expertise is ethnography. Effective deepbrainstimulation for obsessive-compulsive disorder involves an interpretive, evaluative process of optimizing stimulation parameters, which makes it an interesting case to study clinical (...) expertise. The aim of this study is to explore the role of clinical expertise through an ethnography of the particular case of DBS optimization in OCD. In line with the topic of the special issue this article is a part of, we will also use our findings to reflect on ethnography as a method to study complex phenomena like clinical expertise. This ethnography of DBS optimization is based on 18 months of participant observation and nine in-depth interviews with a team of expert clinicians who have been treating over 80 OCD patients since 2005. By repeatedly observing particular situations for an extended period of time, we found that there are recurrent patterns in the ways clinicians interact with patients. These patterns of clinical practice shape the possibilities clinicians have for making sense of DBS-induced changes in patients’ lived experience and behavior. Collective established patterns of clinical practice are dynamic and change under the influence of individual learning experiences in particular situations, opening up new possibilities and challenges. We conclude that patterns of clinical practice and particular situations are mutually constitutive. Ethnography is ideally suited to bring this relation into view thanks to its broad temporal scope and focus on the life-world. Based on our findings, we argue that clinical expertise not only implies skillful engagement with a concrete situation but also with the patterns of clinical practice that shape what is possible in this specific situation. Given this constraining and enabling role of practices, it is important to investigate them in order to find ways to improve diagnostic and therapeutic possibilities. (shrink)
Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deepbrainstimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS (...) to children with refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)
The aims of this paper are to: identify the best framework for comprehending multidimensional impact of deepbrainstimulation on the self; identify weaknesses of this framework; propose refinements to it; in pursuing, show why and how this framework should be extended with additional moral aspects and demonstrate their interrelations; define how moral aspects relate to the framework; show the potential consequences of including moral aspects on evaluating DBS’s impact on patients’ selves. Regarding, I argue that the (...) pattern theory of self can be regarded as such a framework. In realizing and, I indicate that most relevant issues concerning PTS that require resolutions are ontological issues, including the persistence question, the “specificity problem”, and finding lacking relevant aspects of the self. In realizing, I identify aspects of the self not included in PTS which are desperately needed to investigate the full range of potentially relevant DBS-induced changes—authenticity, autonomy, and responsibility, and conclude that how we define authenticity will have implications for our concept of autonomy, which in turn will determine how we think about responsibility. Concerning, I discuss a complex relation between moral aspects and PTS—on one hand, they serve as the lens through which a particular self-pattern can be evaluated; on the other, they are, themselves, products of dynamical interactions of various self-aspects. Finally, I discuss, demonstrating novel way of understanding the effects of DBS on patients’ selves. (shrink)
