Bioethicists often draw sharp distinctions between hope and states like denial, self-deception, and unrealistic optimism. But what, exactly, is the difference between hope and its more suspect cousins? One common way of drawing the distinction focuses on accuracy of belief about the desired outcome: Hope, though perhaps sometimes misplaced, does not involve inaccuracy in the way that these other states do. Because inaccurate beliefs are thought to compromise informed decision making, bioethicists have considered these states to be ones where intervention (...) is needed either to correct the person’s mental state or to persuade the person to behave differently, or even to deny the person certain options. In this article, we argue that it is difficult to determine whether a patient is really in denial, self-deceived, or unrealistically optimistic. Moreover, even when we are confident that beliefs are unrealistic, they are not always as harmful as critics contend. As a result, we need to be more permissive in our approach to patients who we believe are unrealistically optimistic, in denial, or self-deceived—that is, unless patients significantly misunderstand their situation and thus make decisions that are clearly bad for them, we should not intervene by trying to change their mental states or persuade them to behave differently, or by paternalistically denying them certain options. (shrink)

The idea that deep brain stimulation (DBS) induces changes to personality, identity, agency, authenticity, autonomy and self (PIAAAS) is so deeply entrenched within neuroethics discourses that it has become an unchallenged narrative. In this article, we critically assess evidence about putative effects of DBS on PIAAAS. We conducted a literature review of more than 1535 articles to investigate the prevalence of scientific evidence regarding these potential DBS-induced changes. While we observed an increase in the number of publications in theoretical neuroethics (...) that mention putative DBS-induced changes to patients’ postoperative PIAAAS, we found a critical lack of primary empirical studies corroborating these claims. Our findings strongly suggest that the theoretical neuroethics debate on putative effects of DBS relies on very limited empirical evidence and is, instead, reliant on unsubstantiated speculative assumptions probablyin lieuof robust evidence. As such, this may reflect the likelihood of a speculative neuroethics bubble that may need to be deflated. Nevertheless, despite the low number of first-hand primary studies and large number of marginal and single case reports, potential postoperative DBS changes experienced by patients remain a critical ethical concern. We recommend further empirical research in order to enhance theoretical neuroethics work in the area. In particular, we call for the development of better instruments capable of capturing potential postoperative variations of PIAAAS. (shrink)

Multidisciplinary healthcare committees meet regularly to discuss patients’ candidacy for emerging functional neurosurgical procedures, such as Deep Brain Stimulation . Through debate and discussion around the surgical candidacy of particular patients, functional neurosurgery programs begin to mold practice and policy supported both by scientific evidence and clear value choices. These neurosurgical decisions have special considerations not found in non-neurologic committees. The professional time used to resolve these conflicts provides opportunities for the emergence of careful, ethical practices simultaneous with the expansion (...) of therapy applications. (shrink)

The phenomenological effects of deep brain stimulation (DBS) on the self of the patient remains poorly understood and under described in the literature, despite growing evidence that a significant number of patients experience postoperative neuropsychiatric changes. To address this lack of phenomenological evidence, we conducted in-depth, semistructured interviews with 17 patients with Parkinson's disease who had undergone DBS. Exploring the subjective character specific to patients' experience of being implanted gives empirical and conceptual understanding of the potential phenomenon of DBS-induced self-estrangement. (...) Our study concluded that (1) the more patients preoperatively felt alienated by their illness, the more they experienced postoperative self-estrangement, and (2) the notion of self-estrangement seems to exist in association with certain common qualitative characters, namely, loss of control, which reflects a deteriorative estrangement, and distorted perception of capacities, which reveals a restorative estrangement. These findings indicate that subjective self-reports help us to understand some aspects of the potential phenomenon of DBS-induced self-estrangement. (shrink)

Transplantation programs commonly rely on clinicians’ judgments about patients’ social support (care from friends or family) when deciding whether to list them for organ transplantation. We examine whether using social support to make listing decisions for adults seeking transplantation is morally legitimate, drawing on recent data about the evidence-base, implementation, and potential impacts of the criterion on underserved and diverse populations. We demonstrate that the rationale for the social support criterion, based in the principle of utility, is undermined by its (...) reliance on tenuous evidence. Moreover, social support requirements may reinforce transplant inequities, interfere in patients’ personal relationships, and contribute to biased and inconsistent listing procedures. As such, accommodating the needs of patients with limited social support would better balance ethical commitments to equity, utility, and respect for persons in transplantation. We suggest steps for researchers, transplantation programs, and policymakers to improve fair use of social support in transplantation. (shrink)

This article explores the notion of the dislocated self following deep brain stimulation (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)

In this article, we explore how deep brain stimulation (DBS) devices designed to “close the loop”—to automatically adjust stimulation levels based on computational algorithms—may risk taking the individual agent “out of the loop” of control in areas where (at least apparent) conscious control is a hallmark of our agency. This is of particular concern in the area of psychiatric disorders, where closed-loop DBS is attracting increasing attention as a therapy. Using a relational model of identity and agency, we consider whether (...) DBS designed for psychiatric regulation may require special attention to agency. To do this, we draw on philosophical work on relational identity and agency, connecting it with reports from people using first-generation DBS devices for depression and obsessive-compulsive disorder. We suggest a way to extend a notion of relational agency to encompass neural devices. (shrink)

In this article, I explore select case studies of Parkinson patients treated with deep brain stimulation 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)

While new generations of implantable brain computer interface devices are being developed, evidence in the literature about their impact on the patient experience is lagging. In this article, we address this knowledge gap by analysing data from the first-in-human clinical trial to study patients with implanted BCI advisory devices. We explored perceptions of self-change across six patients who volunteered to be implanted with artificially intelligent BCI devices. We used qualitative methodological tools grounded in phenomenology to conduct in-depth, semi-structured interviews. Results (...) show that, on the one hand, BCIs can positively increase a sense of the self and control; on the other hand, they can induce radical distress, feelings of loss of control, and a rupture of patient identity. We conclude by offering suggestions for the proactive creation of preparedness protocols specific to intelligent—predictive and advisory—BCI technologies essential to prevent potential iatrogenic harms. (shrink)

Physicians are expected to engage patients as partners in identifying the possible benefits and harms associated with treatment options and selecting from among medically appropriate treatment options, rather than simply dictating what treatments patients will and will not receive. This collaborative model reflects the recognition that citizens in multicultural societies have diverse values and are likely to have different views about whether the possible benefits of a medical intervention outweigh the possible harms. However, there are circumstances in which the collaborative (...) process breaks down due to irresolvable disagreement. Especially challenging are cases in which patients are expected to die if they do not receive a treatment and either the patients or their surrogates insist on the treatment despite the physician's belief that providing it is ill advised. The source of disagreement is often differing appraisals of the risks and potential benefits. In such cases, physicians generally judge that there is insufficient likelihood or magnitude of benefit to justify the burdens or expense of treatment, while patients or surrogates believe that the small chance of preventing the patient's death is sufficient to justify the costs and potential burdens to the patient.There is a perception that surgeons enjoy considerable discretion in deciding when the risks of a procedure outweigh the expected benefits. An important contrast can be drawn between surgeons and intensivists—physicians who specialize in the medical management of critically ill patients. We will argue that there are good reasons for subjecting the decisions of both surgeons and intensivists to some oversight. We begin by showing that, for many cases, major professional society guidelines for intensivists recommend oversight via a procedural mechanism rather than unilateral decision‐making by individual clinicians. Next, we present reasons for adopting a procedural approach to dispute resolution, and we argue that these reasons apply to situations in which intensivists believe that patients or surrogates are requesting inappropriate life support as well as to many disagreements between surgeons and surrogates. Finally, we present and respond to several objections. (shrink)