In Phillip Kerr’s 1994 spellbinding novel A Philosophical Investigation, the medical test to which the protagonist refers is a functional brain scan based on positron emission tomography. It is used to run large studies of male and female brains and, following a lead suggested by animal studies, has been used to identify rare cases of human male subjects who lack the ventral medial nucleus. This nucleus, in the experiment, is hypothesized to inhibit the activity of the sexually dimorphic nucleus, a (...) preoptic area of the male brain believed to be a repository of male aggressive response. Prior research, we learn from the plot, shows that 3 in 100,000 human males are VMN-negative. Thirty percent of those affected are believed to be in prison or to have a criminal record; 70% are believed to stabilize levels of aggression by producing increased levels of estrogen. Identities of subjects participating in the brain scan studies are protected through the conversion of real names to those of famous figures of the past — Bertrand Russell, Charles Dickens. Those for whom results are unfavorable are recontacted, and they are offered counseling. (shrink)

Supply-side interventions such as prescription drug monitoring programs, “pill mill” laws, and dispensing limits have done little to quell the burgeoning opioid crisis. An increasingly popular demand-side alternative to these measures – now adopted by 38 jurisdictions in the USA and 7 provinces in Canada — is court-mandated involuntary commitment and treatment. In Massachusetts, for example, Part I, Chapter 123, Section 35 of the state's General Laws allows physicians, spouses, relatives, and police officers to petition a court to involuntarily commit (...) and treat a person whose alcohol or drug abuse poses a likelihood of serious harm. This paper explores the ethical underpinnings of this law as a case study for others. First, we highlight the procedural and substantive standards of Section 35 and evaluate the application of the law in practice, including the frequency with which it has been invoked and outcomes. We then use this background to inform an ethical critique of the law. Specifically, we argue that the infringement of autonomy and privacy associated with involuntary intervention under Section 35 is not currently justified on the grounds of a lack of evidenced benefits and a risk of significant of harm. Further ethical concerns also arise from a lack of standard of care provided under the Section 35 pathway. Based on this analysis, we advance four recommendations for change to mitigate these ethical shortcomings. (shrink)

There is substantial literature on fetal alcohol spectrum disorder research involving Aboriginal children, but little related literature on other common neurodevelopmental conditions such as autism spectrum disorder or cerebral palsy for this population. As part of our work in cross-cultural neuroethics, we examined this phenomenon as a case study in Canada. We conducted semi-structured interviews with health researchers working on the frontline with First Nation communities to obtain perspectives about: reasons for the lack of ASD and CP research within (...) the Aboriginal context, the potential ethical and social implications of this disparity, and recommendations for change. Participants reported that the major barriers to engage in ASD or CP research are under-reporting and under-diagnosis of these conditions in Aboriginal communities, difficulties in establishing trust between community members and researchers, challenges in accessing children living under the care of child welfare services, and lack of support from universities and funding agencies to encourage community partnerships. They further perceived threats to justice as the population is denied the benefits of ASD and CP research, and stigma related to the possible over-representation of FASD in the population. The adoption of strength- and community-based practices to improve engagement and address disparities, and to create health databases with prevalence rates that are representative of all forms of disability in both Aboriginal and non-Aboriginal populations are critical steps to close these gaps. (shrink)

Without exaggeration, it could be said that we are entering a golden age of neuroscience. Informed by recent developments in neuroimaging that allow us to peer into the working brain at both a structural and functional level, neuroscientists are beginning to untangle mechanisms of recovery after brain injury and grapple with age-old questions about brain and mind and their correlates neural mechanisms and consciousness. Neuroimaging, coupled with new diagnostic categories and assessment scales are helping us develop a new diagnostic nosology (...) about disorders of consciousness which will likely improve prognostication and suggest therapeutic advances. Historically such diagnostic refinement has yield therapeutic advances in medicine and there is no reason to doubt that this will be the case for disorders of consciousness, perhaps bringing relief to a marginalized population now on the periphery of the therapeutic agenda. In spite of this promise, the translation of research findings into the clinical context will be difficult. As we move from descriptive categories about disorders of consciousness, like the vegetative or minimally conscious states, to ones further specified by integrating behavioral and neuroimaging findings, humility not hubris should be the virtue that guides the ethical conduct of research and practice. (shrink)

The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides (...) a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience. (shrink)

Advances in neuroscience are changing how mental health issues such as addiction are understood and addressed as a brain disease. Although a brain disease model legitimizes addiction as a medical condition, it promotes neuro-essentialist thinking and categorical ideas of responsibility and free choice, and undermines the complexity involved in its emergence. We propose a “biopsychosocial systems” model where psychosocial factors complement and interact with neurogenetics. A systems approach addresses the complexity of addiction and approaches free choice and moral responsibility within (...) the biological, lived experience and sociohistorical context of the individual. We examine heroin-assisted treatment as an applied case example within our framework. We conclude with a discussion of the model and its implications for drug policy, research, addiction health care systems and delivery, and treatment of substance use problems. (shrink)

The history and genesis of major public clinical ethics controversies is intimately related to the publication of opinions and responses in media coverage. To provide a sample of public response in the media, this paper reports the results of a content analysis of letters to editors published in the four most prolific American newspapers for the Schiavo controversy. Opinions expressed in the letters sampled strongly supported the use of living wills and strongly condemned public attention to the case as (...) well as political interventions. Letters tended to be against withdrawal of life support, proxy consent and associated procedures as well as against court decisions and legal procedures. In comparison with reports written by journalists, letters to editors contained fewer controversial claims about Schiavo''s neurological condition and behavioural repertoire but similar loaded language to describe withdrawal of life support. Distinct public discourses can be encountered in different stakeholders suggesting complex and extensive pluralism even within the media. (shrink)

Electroencephalographic monitoring provides critical diagnostic and management information about patients with epilepsy and seizure mimics. Admission to an epilepsy monitoring unit (EMU) is the gold standard for such monitoring in major medical facilities worldwide. In many countries, access can be challenged by limited resources compared to need. Today, triaging admission to such units is generally approached by unwritten protocols that vary by institution. In the absence of explicit guidance, decisions can be ethically taxing and are easy to challenge. In an (...) effort to address this gap, we propose a two-component approach to EMU triage that takes into account the unique landscape of epilepsy monitoring informed by triage literature from other areas of medicine. Through the strategic component, we focus on the EMU wait list management infrastructure at the institutional level. Through the principled component, we apply a combination of the ethical principles of prioritarianism, utilitarianism and justice to triage; and we use individual case examples to illustrate how they apply. The effective implementation of this approach to specific epilepsy centres will need to be customised to the nuances of different settings, including diverse practice patterns, patient populations and constraints on resource distribution, but the conceptual consolidation of its components can alleviate some of the pressures imposed by the complex decisions involved in EMU triage. (shrink)

The author offers a defense for elective death on utilitarian grounds, but one that is presented specifically from the perspective of someone who: 1) faces a potentially terminal illness and diminishing quality of life; 2) views death as nothing more than a return to prenatal nonbeing; and 3) maintains common humanist ethical commitments. The argument, then, is uniquely situated and limited in scope, rooted both in the particulars of his recent experience with a rheumatic autoimmune illness and non-Hodgkin’s lymphoma as (...) well as in a worldview shaped largely by emerging narratives in the sciences. Drawing upon the work of J.S. Mill and P. Singer, the author begins by assuming that one is generally free to act on a preference for nonbeing so long as others are not unduly harmed or thwarted in pursuing their own aims as a result. But a humanist, he suggests, ideally ought to press beyond this minimum criterion and do one’s best to maximize eudaimonia by carefully weighing how elective death would likely affect others to whom one is currently obligated in significant ways. The focus of one’s ethical reasoning, then, should remain on maximizing well-being and minimizing harm, not on creating a logical flawless and internally coherent defense that may satisfy a set of abstract or universally applicable criteria drawn up by others in an effort to define precisely what might render a given suicide “rational” or “morally permissible.”. (shrink)

This paper argues that the DSM diagnostic category 'major depression' is so permissive that it fails to distinguish the phenomenology of depression from a general 'feeling of being ill' that is associated with a range of somatic illnesses. We start by emphasizing that altered bodily experience is a conspicuous and commonplace symptom of depression. We add that the experience of somatic illness is not exclusively bodily; it can involve more pervasive experiential changes that are not dissimilar to those associated with (...) depression. Then we consider some recent work on inflammation and depression, which suggests that the experience of depression and the 'feeling of being ill' are, in some cases at least, much the same . However, we add that the phenomenology of depression is heterogeneous and that many cases involve additional or different symptoms. We conclude that 'major depression' is a placeholder for a range of different experiences, which are almost certainly aetiologically diverse too. (shrink)

This article explores illness as an assemblage of bodies, discourses, and practices by tracing a genealogy of the condition hystero-epilepsy in order to show the precarity of dominant bio-psychiatric ideology in the present. I read Siri Hustvedt’s case study of her own nervous condition with and against other histories of nerves, including Charcot’s treatment of hystero-epilepsy in the 1870s, Foucault’s treatment of hysteria, simulation, and the ‘neurological body’ presented in his lectures in 1974, and Elizabeth Wilson’s recent treatment of (...) the Freudian concept of ‘somatic compliance.’ I assemble this eclectic hystero-epileptic archive not in order to present a definitive history of hystero-epilepsy, but rather to think about how illness is made, unmade, and remade in the clinic and narrative. (shrink)

BackgroundFollowing several landmark rulings and increasing public support for physician-assisted death, in 2016, Canada became one of a handful of countries legalising medical assistance in dying (MAiD) with Bill C-14. However, the revised Bill C-7 proposes the specific exclusion of MAiD where a mental disorder is the sole underlying medical condition (MAiD MD-SUMC).AimThis review explores how some persons with serious and persistent mental illness (SPMI) could meet sensible and just criteria for MAiD under the Canadian legislative framework.MethodsWe review the proposed (...) Bill C-7 criteria (capacity, voluntariness, irremediability and suffering) as well as the nuances involved in separating a well-reasoned request for assisted suicide from what might be solely a manifestation of a SPMI.FindingsIn this paper, we argue against the absolute exclusion of patients with SPMIs from accessing MAiD. Instead, we propose that in some circumstances, MAiD MD-SUMC may be justifiable while remaining the last resort. Conducting MAiD eligibility assessments removes the need to introduce diagnosis-specific language into MAiD legislation. Competent psychiatric patients who request MAiD should not be treated any differently from other eligible candidates. Many individuals with psychiatric disorders will be incapable of consenting to MAiD. The only ethical option is to assess eligibility for MAiD on an individual basis and include as legitimate candidates those who suffer solely from psychiatric illness who have the decisional capacity to consent to MAiD. (shrink)

Psychiatric patients sometimes ask where to draw the line between who they are – their selves – and their mental illness. This problem is referred to as the self-illness ambiguity in the literature; it has been argued that solving said ambiguity is a crucial part of psychiatric treatment. I distinguish a Realist Solution from a Constructivist one. The former requires finding a supposedly pre-existing border, in the psychiatric patient’s mental life, between that which belongs to the self and that which (...) belongs to the mental illness. I argue that no such border exists, and that attempts to find it might even render the felt ambiguity worse. Instead, any solution must be constructivist; the patient (and others) should deliberate and discuss what to identify with or not. I further argue that psychiatric patients need not see their mental illness as wholly distinct from themselves to avoid ‘identifying with their diagnoses' in a problematic way. Finally, we can excuse problematic behaviour by mentally ill people – in fact, we can do so in a more nuanced and constructive way – while rejecting the view that the mental illness is wholly distinct from the patient’s self. (shrink)

In the 2000s, several psychiatrists cited the lack of relational disorders in the DSM-IV as one of the two most glaring gaps in psychiatric nosology, and campaigned for their inclusion in the DSM-5. This campaign failed, however, presumably in part due to serious “ontological concerns” haunting such disorders. Here, I offer a path to quell such ontological concerns, adding to previous conceptual work by Jerome Wakefield and Christian Perring. Specifically, I adduce reasons to think that collective disorders are compatible with (...) key metaphysical commitments of contemporary scientific psychiatry, and argue that if one accepts the existence of mental disorders in individuals as medical, then one has good reasons to accept the existence of collective disorders as medical. First, I outline how collective disorders are reconcilable with both the harmful dysfunction model of disorder and a denial of mind-body dualism. I then identify some potential weaknesses in the main pre-existing example of a collective disorder, offering my own examples as supplements. These examples’ medical plausibility is bolstered by: work in philosophy of biology on the generalized selected effects theory of function, and work in analytic philosophy of mind on collective mentality. Finally, after offering preliminary responses to the objection that the recognition of collective disorders may lead to an overpathologization of everyday life, I spell out ways in which this recognition may have empowering effects for some would-be patients; for example, by providing substance to the notion of a “sane response to an insane world.”. (shrink)

In the 2000s, several psychiatrists cited the lack of relational disorders (what I call “collective disorders”—disorders of groups rather than individuals) in the DSM-IV as one of the two most glaring gaps in psychiatric nosology, and campaigned for their inclusion in the DSM-5. This campaign failed, however, presumably in part due to serious “ontological concerns” haunting such disorders. Here, I offer a path to quell such ontological concerns, adding to previous conceptual work by Jerome Wakefield and Christian Perring. Specifically, I (...) adduce reasons to think that collective disorders are compatible with key metaphysical commitments of contemporary scientific psychiatry, and argue that if one accepts the existence of mental disorders in individuals as medical, then one has good reasons to accept the existence of collective disorders as medical. First, I outline how collective disorders are reconcilable with both the harmful dysfunction model of disorder and a denial of mind-body dualism. I then identify some potential weaknesses in the main pre-existing example of a collective disorder, offering my own examples as supplements. These examples’ medical plausibility is bolstered by: (1) work in philosophy of biology on the generalized selected effects theory of function (largely from Justin Garson), and (2) work in analytic philosophy of mind on collective mentality (largely from Bryce Huebner). Finally, after offering preliminary responses to the objection that the recognition of collective disorders may lead to an overpathologization of everyday life, I spell out ways in which this recognition may have empowering effects for some would-be patients; for example, by providing substance to the notion of a “sane response to an insane world.”. (shrink)

Narcolepsy type 1 deeply impacts on quality of life, especially during adolescence, with NT1 children and adolescents that frequently report difficulties in integration with peers and decreased participation in after-school activities. Here we describe the case of NT1 teenager girl presenting with severe physical and social withdrawal, fulfilling the proposed diagnostic criteria for hikikomori, together with the classic NT1 symptoms. Social withdrawal is an overlooked phenomenon among NT1 children and adolescents that, if present, require a multidisciplinary approach and personalized (...) interventions, but patients can benefit from NT1 pharmacological treatment. (shrink)

Various authors have argued that progress in the neurocognitive and neuropsychiatric sciences might threaten the commonsense understanding of how the mind generates behavior, and, as a consequence, it might also threaten the commonsense ways of attributing moral responsibility, if not the very notion of moral responsibility. In the case of actions that result in undesirable outcomes, the commonsense conception—which is reflected in sophisticated ways in the legal conception—tells us that there are circumstances in which the agent is entirely and (...) fully responsible for the bad outcome and circumstances in which the agent is not at all responsible for the bad outcome. (shrink)

With advances in genetic technology, there are increasing concerns about the way in which genetic information may be abused, particularly in people at increased genetic risk of developing certain disorders. In a recent case in Hong Kong, the court ruled that it was unlawful for the civil service to discriminate in employment, for the sake of public safety, against people with a family history of mental illness. The plaintiffs showed no signs of any mental health problems and no genetic (...) testing was performed. This was the first case concerning genetic discrimination in common law jurisdictions, therefore the court's judgment has implications for how genetic discrimination cases may be considered in the future. The court considered it inappropriate to apply population statistics or lifetime risks to individuals while examining fitness for work. It recommended an individualised assessment of specific risks within the job, relative to other risks posed by that workplace. (shrink)

My ambition in this paper is to provide an account of an unacknowledged example of blameless guilt that, I argue, merits further examination. The example is what I call carer guilt: guilt felt by nurses and family members caring for patients with palliative-care needs. Nurses and carers involved in palliative care often feel guilty about what they perceive as their failure to provide sufficient care for a patient. However, in some cases the guilty carer does not think that he has (...) the capacity to provide sufficient care; he has, in his view, done all he can. These carers cannot legitimately be blamed for failing to meet their own expectations. Yet despite acknowledging their blamelessness, they nonetheless feel guilty. My aims are threefold: first, to explicate the puzzling nature of the carer guilt phenomenon; second, to motivate the need to solve that puzzle; third, to give my own account of blameless guilt that can explain why carers feel guilty despite their blamelessness. In doing so I argue that the guilt experienced by carers is a legitimate case of guilt, and that with the right caveats it can be considered an appropriate response to the progressive deterioration of someone for whom we care. (shrink)

Illness severity is a priority setting criterion in several countries. Age seems to matter when considering severity, but perhaps not small age differences. In the following article we consider Small Differences : small differences in age are not relevant when considering differential illness severity. We show that SD cannot be accommodated within utilitarian, prioritarian or egalitarian theories. Attempting to accommodate SD by postulating a threshold model becomes exceedingly complex and self-defeating. The only way to accommodate SD seems to be to (...) accept some form of relevance view, where some age differences are irrelevant. This view can accommodate SD, but at the expense of consistent priority orderings. Severity thus becomes unsuitable for systematic decision-making. We argue that SD should be dismissed and that we should accept a continuous relationship between severity of illness and age. (shrink)

How is a terminally ill patient treated by the surrounding people in the U.S. and Japan? How does a terminally ill patient decide on his or her own treatment? These questions will be examined in a study of intensive medical care, received by a terminally ill Japanese cancer patient in the U.S. and Japan. This casereflects the participant observation by a Japanese anthropologist for about 8 years in the United States and Japan on one patient who was hospitalized in both (...) countries on and off for about eight years. The objective of this study is to illuminate the different concept of personhood between the U.S. and Japan that appeared in different cultural practices of both countries and in the subject’s own decision making process. The significant differences appeared between theU.S. and Japan in the concepts of (1) science, (2) suffering, (3) Power of Attorney and Doisho (Consent Form), and (4) organized care. The interpretation of such differences indicates that seemingly universal practices across countries suggest cultural specific concepts and their management. Therefore, ethical norms appeared differently accordingly to each country. (shrink)

This paper advances a new criterion of a vulnerable population in research. According to this criterion, there are consent-based and fairness-based reasons for calling a group vulnerable. The criterion is then applied to the case of people with serious illnesses. It is argued that people with serious illnesses meet this criterion for reasons related to consent. Seriously ill people have a susceptibility to “enticing offers” that hold out the prospect of removing or alleviating illness, and this susceptibility reduces their (...) ability to safeguard their own interests. This explains the inclusion of people with serious illnesses in the Belmont Report’s list of populations needing special protections, and supports the claim that vulnerability is the rule, rather than the exception, in biomedical research. (shrink)

Using the case of Ebola Virus Disease as an example, this paper shows why patients at high risk for death have a defensible moral claim to access unregistered medical interventions, without having to enrol in randomized placebo controlled trials.A number of jurisdictions permit and facilitate such access under emergency circumstances. One controversial question is whether patients should only be permitted access to UMI after trials investigating the interventions are fully recruited. It is argued that regulatory regimes should not prioritise (...) trial recruitment over patient access, even if this results in drug research and development delays.We describe how the moral duty to rescue impacts on others' duties to oblige patients seeking emergency access to unregistered medical interventions. The view that eligible patients are owed the provision of access to UMI regardless of their willingness to enrol in a randomised controlled trial is defended. (shrink)

BackgroundAll hospital trusts in Norway have clinical ethics committees. Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.MethodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel (...) who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.ResultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.ConclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion. (shrink)

The first decisive steps of medicine towards becoming a science in its present shape happen to coincide with “the rise of the novel” in the eighteenth century. Before this well known and in our days still growing scientific specialization of medicine, the connections between literature and medicine were both many and close. By reading and analyzing a contemporary novel, The Death of a Beekeeper by the Swedish author Lars Gustafsson (1978), this article is an attempt to explore to which extent (...) a fictional narrative about a unique case of cancer may illuminate challenges associated with the experience of serious illness. Our claim is that medicine might draw wisdom from literature, its ability to create connections through narrative, to illuminate the complexity of ethical dilemmas, and to intertwine symptoms, life stories, and contexts. We argue that by being in the company of literary narratives and philosophical questions, physicians as well as other health care professionals may acquire clinically relevant skills which help them reach the ethically defined goals of their profession. (shrink)

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief. I argue for this by illuminating underappreciated structural features of typical grief — that is, grief over a bereavement — which are shared but under-recognized. I offer a common chronic illness, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as a striking case study. I then use this analysis to highlight some clinical challenges that arise should this claim receive (...) uptake in clinical practice. Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high. If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated. I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve. (shrink)

Phenomenology has contributed to healthcare by providing resources for understanding the lived experience of the patient and their situation. But within a burgeoning literature on the characteristic features of illness, there has not yet been an account appropriate to describe congenital illnesses: conditions which are present from birth and cause suffering or medical threat to their bearers. Congenital illness sits uncomfortably with standard accounts in phenomenology of illness, in which concepts such as loss, doubt, alienation and unhomelikeness presuppose prior health. (...) These accounts reflect, in different ways, Maurice Merleau-Ponty’s assumption that the ways of living of the ill contain allusions to fundamental, healthy functions. The originality of congenital illness complicates this assumption and demands its own original phenomenology. In this paper, I sketch my personal experience living with a single-ventricle heart condition. While some of this story may reflect my own idiosyncratic experience, I hope that much of it will resonate with the congenital illness experience. I argue that the phenomenological literature on illness, grounded in the notion of loss, does not describe the congenital illness experience. I show how a number of other patient-centred theories of health and illness which have been influential on phenomenology can and cannot elucidate congenital illness. In particular, I consider Georges Canguilhem’s account of the normal and the pathological; debates in disability; and the notion of illness as biographical disruption. I show that congenital illness results in the preadmission of its patients to a paradoxical logic of medical palliation, one product of which is existential maturity. (shrink)