Climate change: Attitudes and concerns of, and learnings from, people with neurological conditions, carers, and health care professionals.

OBJECTIVE: Concern about climate change among the general public is acknowledged by surveys. The health care sector must play its part in reducing greenhouse gas emissions and adapting to a changing climate, which will require the support of its stakeholders including those with epilepsy, who may be especially vulnerable. It is important to understand this community's attitudes and concerns about climate change and societal responses. METHODS: A survey was made available to more than 100 000 people among a section of the neurological community (patients, carers, and clinicians), focused on epilepsy. We applied quantitative analysis of Likert scale responses supported by qualitative analyses of free-text questions with crossover analyses to identify consonance and dissonance between the two approaches. RESULTS: A small proportion of potential respondents completed the survey; of 126 respondents, 52 had epilepsy and 56 explicitly declared no illness. The survey indicated concern about the impact of climate change on health within this neurological community focused on epilepsy. More than half of respondents considered climate change to have been bad for their health, rising to 68% in a subgroup with a neurological condition; over 80% expected climate change to harm their health in future. Most (>75%) believed that action to reduce greenhouse gas emissions will lead to improved health and well-being. The crossover analysis identified cost and accessibility as significant barriers. SIGNIFICANCE: The high level of concern about climate change impacts and positive attitudes toward policies to reduce greenhouse gas emissions provide support for climate action from the epilepsy community. However, if policies are implemented without considering the needs of patients, they risk being exclusionary, worsening inequalities, and further threatening neurological health and well-being.

Subjective seizure symptom reporting in functional/dissociative seizures and epilepsy: Effects of sampling technique and patient characteristics.

BACKGROUND: Differences in subjectively reportable ictal experiences between epilepsy and functional/dissociative seizures (FDS) have received less attention than visible manifestations. Patients with FDS (pwFDS) tend to report seizure symptoms differently than patients with epilepsy (pwE). The effects of symptom elicitation method and mediation by psychopathological traits have not been examined and may aid in differentiating the disorders. METHOD: Analysis of responses of 24 pwE and 28 pwFDS in interviews exploring ictal experiences through open questioning followed by structured closed questioning using possible symptom prompts (74-item modified Psychosensory-Psychomotor Phenomena Interview, PPPI); self-report of psychological profile (HADS-A, HADS-D, PHQ-15, DES-T, THQ, PCL-C). RESULTS: Symptom prompting with PPPI elicited three times more seizure symptoms than open questions in pwE (median 34 vs. 11.5, p = 0.005) and over four times more in pwFDS (42.5 vs. 11, p = 0.001). Intra-ictal symptoms were reported freely more frequently by pwE (median 6.5 vs. 4, p = 0.005), while pwFDS reported more pre-ictal symptoms after prompts (median 6 vs 14.5, p = 0.004). The difference between freely reported and PPPI-elicited symptoms correlated with different psychopathological traits in pwE and pwFDS. Symptoms of anxiety (HADS-A) correlated more strongly with prompted symptoms among pwE than pwFDS (z = 2.731, p = 0.006). CONCLUSION: Prompting generates more detailed ictal symptom profiles than simply encouraging patients to narrate their subjective seizure experiences. While pwFDS freely reported fewer symptoms related to the intra-ictal period compared to pwE, pwFDS reported more pre-ictal symptoms than pwE when prompted. Differences in the psychopathological traits associated with the number of peri-ictal symptoms captured by symptom prompting in pwE and pwFDS possibly reflect etiological or psychological differences between these patient groups.

'I just need to know what they are and if you can help me': Medicalization and the search for legitimacy in people diagnosed with non-epileptic attack disorder.

This paper focuses on the struggles for legitimacy expressed by people with non-epileptic attack disorder (NEAD), one of the most common manifestations of functional neurological disorder presenting to emergency and secondary care services. Nonepileptic attacks are episodes of altered experience, awareness, and reduced self-control that superficially resemble epileptic seizures or other paroxysmal disorders but are not associated with physiological abnormalities sufficient to explain the semiological features. "Organic" or medicalized explanations are frequently sought by patients as the only legitimate explanation for symptoms, and consequently, a diagnosis of NEAD is often contested. Drawing on narrative interviews with patients from a small exploratory study and using a sociological perspective, we propose that a psychological account of NEAD does not provide a sufficiently legitimate path into a socially sanctioned sick role. This is a reflection of the dominance of biomedicine and the associated processes of medicalization. These processes are, we argue, the sole route to achieving legitimacy. The stress-based or psychologically oriented explanations offered to patients in contemporary medical models of the etiology of NEAD engender an uncertain identity and social position and fail to provide many patients with an account of the nature or origin of their symptoms that they find satisfactory or convincing. These struggles for legitimacy (shared by others with functional or somatoform conditions) are sharpened by key features of the contemporary healthcare landscape, such as the increasing framing of health through a lens of 'responsibilization'.

The hermeneutics of symptoms.

The clinical encounter begins with presentation of an illness experience; but throughout that encounter, something else is constructed from it - a symptom. The symptom is a particular interpretation of that experience, useful for certain purposes in particular contexts. The hermeneutics of medicine - the study of the interpretation of human experience in medical terms - has largely taken the process of symptom-construction to be transparent, focussing instead on how constellations of symptoms are interpreted as representative of particular conditions. This paper examines the hermeneutical activity of symptom-construction more closely. I propose a fourfold account of the clinical function of symptoms: as theoretical entities; as tools for communication; as guides to palliative intervention; and as candidates for medical explanation or intervention. I also highlight roles they might play in illness experience. I use this framework to discuss four potential failures of symptom-interpretation: failure of symptom-type and symptom-token recognition; loss of the complete picture of illness experience through overwhelming emphasis on its symptomatic interpretation; and intersubjective feedback effects of symptom description altering the ill person's own perceptions of their phenomenal experience. I conclude with some suggestions of potential remedies for failures in the process of symptom-construction.

Peri-ictal responsiveness to the social environment is greater in psychogenic nonepileptic than epileptic seizures.

OBJECTIVE: To look for evidence of peri-ictal social interaction in psychogenic nonepileptic seizures (PNES) and epileptic seizures exploring the notion of PNES as a form of nonverbal communication. METHODS: Video recordings of typical seizures experienced by patients with epilepsy and PNES were obtained in a naturalistic social setting (residential epilepsy monitoring unit). Video analysis by three nonexpert clinicians identified 18 predefined semiological and interactional features indicative of apparent impairment of consciousness or of peri-ictal responsiveness to the social environment with assessment of interrater reliability using Fleiss κ. Features were compared between epileptic seizures and PNES. RESULTS: One hundred eighty-nine seizures from 50 participants (24 epilepsy, 18 PNES, eight combined) were analyzed. At least fair (κ > 0.20) interrater agreement was achieved for 14 features. The PNES and epileptic seizures compared were of similar severity in terms of ictal impairment of consciousness (κ = 0.34, odds ratio [OR] = 1.11, 95% confidence interval [CI] = 0.62-1.96) and responsiveness (κ = 0.52, OR = 1.01, 95% CI = 0.55-1.86). PNES were more likely to be preceded by attempts to alert others (κ = 0.52, OR = 12.4, 95% CI = 3.2-47.7, P < .001), to show intensity affected by the presence of others (κ = 0.44, OR = 199.4, 95% CI = 12.0-3309.9, P < .001), and to display postictal behavior affected by the presence of others (κ = 0.35, OR = 91.1, 95% CI = 17.2-482.1, P < .001). SIGNIFICANCE: Nonexpert raters can, with fair to moderate reliability, rate features characterizing ictal impairment of consciousness and responsivity in video recordings of seizures. PNES are associated with greater peri-ictal responsiveness to the social environment than epileptic seizures. These findings are consistent with a potential communicative function of PNES and could be of differential diagnostic significance.

Health justice in the Anthropocene: medical ethics and the Land Ethic.

Industrialisation, urbanisation and economic development have produced unprecedented (if unevenly distributed) improvements in human health. They have also produced unprecedented exploitation of Earth's life support systems, moving the planet into a new geological epoch, the Anthropocene-one defined by human influence on natural systems. The health sector has been complicit in this influence. Bioethics, too, must acknowledge its role-the environmental threats that will shape human health in this century represent a 'perfect moral storm' challenging the ethical theories of the last. The US conservationist Aldo Leopold saw this gathering storm more clearly than many, and in his Land Ethic describes the beginnings of a route to safe passage. Its starting point is a reinterpretation of the ethical relationship between humanity and the 'land community', the ecosystems we live within and depend upon; moving us from 'conqueror' to 'plain member and citizen' of that community. The justice of the Land Ethic questions many presuppositions implicit to discussions of the topic in biomedical ethics. By valuing the community in itself-in a way irreducible to the welfare of its members-it steps away from the individualism axiomatic in contemporary bioethics. Viewing ourselves as citizens of the land community also extends the moral horizons of healthcare from a solely human focus. Taking into account the 'stability' of the community requires intergenerational justice. The resulting vision of justice in healthcare-one that takes climate and environmental justice seriously-could offer health workers an ethic fit for the future.

The influence of attachment style and relationship quality on quality of life and psychological distress in carers of people with epileptic and nonepileptic seizures.

BACKGROUND: Seizure disorders affect not only the individual living with seizures, but also those caring for them. Carer-patient relationships may be influenced by, and have an influence on, some aspects of living with seizure disorders - with potentially different interactions seen in epilepsy and psychogenic nonepileptic seizures (PNES). OBJECTIVES: We studied the influence of patient and carer attachment style and relationship quality on carer wellbeing and psychological distress, and explored whether these associations differ between carers for people with epilepsy and for those with PNES. METHODS: Consecutive adult patients with epilepsy (N = 66) and PNES (N = 16) and their primary informal carers completed questionnaires about relationship quality, attachment style, and psychopathological symptom burden. We used correlation analysis to identify associations between relationship quality, attachment style, and carer depression, anxiety, and wellbeing; and to explore differences in these associations between carers for people with epilepsy and for those with PNES. RESULTS: Overall, 25.3% of carers for people with epilepsy or PNES had scores above the clinical cutoff for depression and 39.6% for anxiety; significantly more carers for people with PNES reported clinically significant depression (47.1% vs. 20.0%), but there was no difference in anxiety rates likely to be of clinical relevance. Correlations differed significantly between carers for people with epilepsy and for those with PNES in terms of patient quality of life and carer anxiety (rE = -0.577, rPNES = -0.025); seizure severity and carer depression (rE = 0.248, rPNES = -0.333) and mental wellbeing (rE = -0.356, rPNES = 0.264); patient depression and carer anxiety (rE = 0.387, rPNES = -0.266); and patient anxious attachment and carer anxiety (rE = 0.382, rPNES = 0.155). SIGNIFICANCE: Clinically evident levels of psychological distress are prevalent among carers for people with epilepsy and PNES. Clinical and relationship variables affect carer quality of life differently depending on whether care is provided for individuals with epilepsy or PNES.

Does clinical ethics need a Land Ethic?

A clinical ethics fit for the Anthropocene-our current geological era in which human activity is the primary determinant of environmental change-needs to incorporate environmental ethics to be fit for clinical practice. Conservationist Aldo Leopold's essay 'The Land Ethic' is probably the most widely-cited source in environmental philosophy; but Leopold's work, and environmental ethics generally, has made little impression on clinical ethics. The Land Ethic holds that "A thing is right when it tends to preserve the integrity, stability, and beauty of the biotic community. It is wrong when it tends otherwise." I argue that a Land Ethic helps to re-frame problems in clinical ethics that more common philosophical approaches struggle to handle, and that it can be incorporated into clinical ethics without succumbing to "environmental fascism". I motivate viewing problems in clinical ethics from the perspective of the 'integrity of the biotic community', then illustrate how this perspective can offer guidance where more commonly-invoked theories-such as consequentialism and Kantian-inspired approaches-struggle, using antimicrobial resistance in nosocomial infection as a case study. The Land Ethic equips us to understand human values as arising within and inseparable from a social-ecological context, and by treating communities (both human and biotic) as valuable in themselves rather than just through the aggregate welfare of their individual participants, we can avoid problems with the 'repugnant conclusion' and utility monster that plague utilitarian accounts.

Diagnosis by Documentary: Professional Responsibilities in Informal Encounters.

Most work addressing clinical workers' professional responsibilities concerns the norms of conduct within established professional-patient relationships, but such responsibilities may extend beyond the clinical context. We explore health workers' professional responsibilities in such "informal" encounters through the example of a doctor witnessing the misdiagnosis and mistreatment of a serious long-term condition in a television documentary, arguing that neither internalist approaches to professional responsibility (such as virtue ethics or care ethics) nor externalist ones (such as the "social contract" model) provide sufficiently clear guidance in such situations. We propose that a mix of both approaches, emphasizing the noncomplacency and practical wisdom of virtue ethics, but grounding the normative authority of virtue in an external source, is able to engage with the health worker's responsibilities in such situations to the individual, the health care system, and the population at large.

Medicalization and epistemic injustice.

Many critics of medicalization (the process by which phenomena become candidates for medical definition, explanation and treatment) express concern that the process privileges individualised, biologically grounded interpretations of medicalized phenomena, inhibiting understanding and communication of aspects of those phenomena that are less relevant to their biomedical modelling. I suggest that this line of critique views medicalization as a hermeneutical injustice--a form of epistemic injustice that prevents people having the hermeneutical resources available to interpret and communicate significant areas of their experience. Interpreting the critiques in this fashion shows they frequently fail because they: neglect the ways in which medicalization may not obscure, but rather illuminate, individuals' experiences; and neglect the testimony of those experiencing first-hand medicalized problems, thus may be guilty of perpetrating testimonial injustice. However, I suggest that such arguments are valuable insofar as they highlight the unwarranted epistemic privilege frequently afforded to medical institutions and medicalized models of phenomena, and a consequent need for greater epistemic humility on the part of health workers and researchers.

Authenticity and autonomy in deep-brain stimulation.

Felicitas Kraemer draws on the experiences of patients undergoing deep-brain stimulation (DBS) to propose two distinct and potentially conflicting principles of respect: for an individual's autonomy (interpreted as mental competence), 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.

The promises and pitfalls of seizure phenomenology.

The typical adult patient presenting with a first seizure has a normal clinical examination, uninformative investigations, and often has no witness to their episode. The assessing clinician, therefore, has one primary source of information to guide their assessment; the patient's experience. However, seizure phenomenology - the subjective seizure experience - has received relatively less attention by researchers than objective semiology or investigations. This essay reviews the clinical importance of seizure phenomenology, and the challenges clinicians face in eliciting accurate and clinically relevant descriptions of ictal experience. I conclude by discussing tools that clinicians may use to support the clinical application of seizure phenomenology, and exploring the subjectivity of epilepsy more broadly.

Scarce vaccine supplies in an influenza pandemic should not be distributed randomly: reply to McLachlan.

In a recent paper, Hugh McLachlan argues from a deontological perspective that the most ethical means of distributing scarce supplies of an effective vaccine in the context of an influenza pandemic would be via an equal lottery. I argue that, even if one accepts McLachlan's ethical theory, it does not follow that one should accept the vaccine lottery. McLachlan's argument relies upon two suppressed premises which, I maintain, one need not accept; and it misconstrues vaccination programmes as clinical interventions targeted solely at protecting the health of vaccinated individuals, rather than as public health interventions targeted at protecting the health of the population as a whole.

How to do things with words: Two seminars on the naming of functional (psychogenic, non-epileptic, dissociative, conversion, ) seizures.

Amongst the most important conditions in the differential diagnosis of epilepsy is the one that manifests as paroxysms of altered behaviour, awareness, sensation or sense of bodily control in ways that often resemble epileptic seizures, but without the abnormal excessive or synchronous electrical activity in the brain that defines these. Despite this importance, there remains little agreement - and frequent debate - on what to call this condition, known inter alia as psychogenic non-epileptic seizures (PNES), dissociative seizures (DS), functional seizures (FS), non-epileptic attack disorder (NEAD), pseudoseizures, conversion disorder with seizures, and by many other labels besides. This choice of terminology is not merely academic - it affects patients' response to and understanding of their diagnosis, and their ability to navigate health care systems.This paper summarises two recent discussions hosted by the American Epilepsy Society and Functional Neurological Disorders Society on the naming of this condition. These discussions are conceptualised as the initial step of an exploration of whether it might be possible to build consensus for a new diagnostic label.

Use of suggestive seizure manipulation methods in the investigation of patients with possible psychogenic nonepileptic seizures-An international ILAE survey.

Video-encephalographic (vEEG) seizure recordings make essential contributions to the differentiation of epilepsy and psychogenic nonepileptic seizures (PNES). The yield of vEEG examinations can be increased through suggestive seizure manipulation (SSM) (ie, activation/provocation/cessation procedures), but its use has raised ethical concerns. In preparation for guidelines on the investigation of patients with PNES, the ILAE PNES Task Force carried out an international survey to investigate practices of and opinions about SSM. An online questionnaire was developed by the ILAE PNES Task Force. Questions were asked at clinical unit or individual respondent level. All ILAE chapters were encouraged to send questionnaires to their members. The survey was open from July 1, 2019, to August 31, 2019. A total of 487 clinicians from 411 units across 94 countries responded. Some form of SSM was used in 296/411 units (72.0%). Over 90% reported the use of verbal suggestion, over 80% the use of activation procedures also capable of eliciting epileptic activity (hyperventilation or photic stimulation). Only 26.3% of units used techniques specifically intended to provoke PNES (eg, saline injection). Fewer than 10% of units had established protocols for SSM, only 20% of units required written patient consent, in 12.2% of units patients received explicitly false information to provoke seizures. Clinicians using SSM tended to perceive no ethical problems, whereas those not using SSM were likely to have ethical concerns about these methods. We conclude that the use of invasive nocebo techniques intended to provoke PNES in diagnostic settings has declined, but SSM is commonly combined with activation procedures also capable of eliciting epileptic activity. While research suggests that openness about the use of PNES-specific nocebo techniques does not reduce diagnostic yield, very few units have suggestion protocols or seek patient consent. This could be addressed through establishing consensus guidance for the practice of SSM.

Machine learning as a diagnostic decision aid for patients with transient loss of consciousness.

BACKGROUND: Transient loss of consciousness (TLOC) is a common reason for presentation to primary/emergency care; over 90% are because of epilepsy, syncope, or psychogenic non-epileptic seizures (PNES). Misdiagnoses are common, and there are currently no validated decision rules to aid diagnosis and management. We seek to explore the utility of machine-learning techniques to develop a short diagnostic instrument by extracting features with optimal discriminatory values from responses to detailed questionnaires about TLOC manifestations and comorbidities (86 questions to patients, 31 to TLOC witnesses). METHODS: Multi-center retrospective self- and witness-report questionnaire study in secondary care settings. Feature selection was performed by an iterative algorithm based on random forest analysis. Data were randomly divided in a 2:1 ratio into training and validation sets (163:86 for all data; 208:92 for analysis excluding witness reports). RESULTS: Three hundred patients with proven diagnoses (100 each: epilepsy, syncope and PNES) were recruited from epilepsy and syncope services. Two hundred forty-nine completed patient and witness questionnaires: 86 epilepsy (64 female), 84 PNES (61 female), and 79 syncope (59 female). Responses to 36 questions optimally predicted diagnoses. A classifier trained on these features classified 74/86 (86.0% [95% confidence interval 76.9%-92.6%]) of patients correctly in validation (100 [86.7%-100%] syncope, 85.7 [67.3%-96.0%] epilepsy, 75.0 [56.6%-88.5%] PNES). Excluding witness reports, 34 features provided optimal prediction (classifier accuracy of 72/92 [78.3 (68.4%-86.2%)] in validation, 83.8 [68.0%-93.8%] syncope, 81.5 [61.9%-93.7%] epilepsy, 67.9 [47.7%-84.1%] PNES). CONCLUSIONS: A tool based on patient symptoms/comorbidities and witness reports separates well between syncope and other common causes of TLOC. It can help to differentiate epilepsy and PNES. Validated decision rules may improve diagnostic processes and reduce misdiagnosis rates. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that for patients with TLOC, patient and witness questionnaires discriminate between syncope, epilepsy and PNES.