The promotion of the self‐managing capacities of people has become a marker of contemporary mental health practice, yet self‐management remains a largely uncontested construct in mental health settings. This discourse analysis based upon the work of Foucault investigates self‐management practices for bipolar disorder and their action upon how a person with bipolar disorder comes to think of who they are and how they should live. Using Foucault's framework for exploring the ethical self and transcripts of interviews with people living with (...) bipolar disorder, this discourse analysis finds that the discursive practices of self‐management for bipolar disorder are prescribing a restricted regime for living based upon the quintessential neo‐liberal subject using practices that are focused upon managing an unreliable and problematic self. The article concludes with the proposition that the problem of bipolar disorder (for which self‐management is an answer) is less about the object itself and more about how we construct the nature of the self. A Māori indigenous ontology is used here as an example of an alternative discursive resource through which people make sense of the self and which allows ways of thinking about self‐management that engage with ambivalence and ambiguity rather than restriction and regulation. (shrink)

Canada has followed the pattern of Benelux nations by legislating sufferingSuffering as the pivotal eligibilityEligibilitycriterionCriterion for euthanasiaEuthanasia/assisted death without requiring terminal prognosis as is needed in most permissive jurisdictions. This chapter will explore the relationship between sufferingSuffering and Medical Assistance in Dying (MAID) and the ways in which sufferingSuffering is understood in the Supreme Court of Canada, the federal Criminal Code legislation and by health care assessors. Based on this analysis, we will argue that the resulting sufferingSufferingeligibilityEligibilitycriterionCriterion leaves the law (...) open to unintended forms of interpretation, thus instituting perhaps the most unbounded and risk-prone form of assisted death in the world. A review of the literature on sufferingSuffering, the wish to dieWish to die, and reasons for MAIDReasons for MAID requests found sufferingSuffering of severe illness to be frequently associated with unstable mental health, social, and existentialExistential variables that are often amenable to therapy or remediation. While sufferingSuffering remains a powerful motivating force to seek opportunities to relieve distress, its use as an eligibilityEligibilitycriterionCriterion for MAID has significant ambiguity in its’ characterization of ‘enduring’ and ‘irremediable’ and thus fails to protect against abuse for the vulnerable. (shrink)

On July 18, 1988, workers at the Metropolitan YWCA Women's Services, a Chicago-area center designed to assist women and children who are survivors of violence and sexual assault, agreed to record in a journal their thoughts at a chosen hour during that day. Each section was written by a different worker. The purpose was to bring together separate voices, all connected through their common work with survivors to begin to understand the impact of this work on their own lives.

The chapter explores the sufferingSufferingassociated with MAIDMedical Assistance in Dying (MAID) giving special attention to assessmentAssessment and the psychological responses elicited in caregivers highlighting the need for all MAIDMedical Assistance in Dying (MAID) enquiries to activate a period of intense assessmentAssessment and the provision of detailed treatment alternatives. This chapter calls for a renewed commitment to compassionCompassion (‘sufferingSuffering together with’) as the communal dynamic to relieve and assuage such sufferingSuffering. Using the four domains of ‘total pain’ (Saunders in The management (...) of terminal malignant disease. Edward Arnold, London, UK, 1978), we summarize the evidence for the multiple opportunities available to ‘relieve often and comfort always.’ Finally, we review evidence on the impactImpactof MAIDMedical Assistance in Dying (MAID) suggesting that the overall burden of sufferingSuffering in Canada has increased since legalization. (shrink)

Volume 19, Issue 10, October 2019, Page 3-7.

This integrative review aims to provide a synthesis of research findings of health-care professionals’ knowledge, attitudes and behaviours relating to patient capacity to consent to or refuse treatment within the general hospital setting. Search strategies included relevant health databases, hand searching of key journals, ‘snowballing’ and expert recommendations. The review identified various knowledge gaps and attitudinal dispositions of health-care professionals, which influence their behaviours and decision-making in relation to capacity to consent processes. The findings suggest that there is tension between (...) legal, ethical and professional standards relating to the assessment of capacity and consent within health care. Legislation and policy guidance concerning capacity assessment processes are lacking, and this may contribute to inconsistencies in practice. (shrink)

BackgroundDelirium is highly prevalent in the general hospital patient population, characterized by acute onset, fluctuating levels of consciousness, and global impairment of cognitive functioning. Mental capacity, its assessment and subsequent consent are therefore prominent within this cohort, yet under-explored.AimThis study of patients with delirium sought to determine the processes by which consent to medical treatment was attempted, how capacity was assessed, and any subsequent actions thereafter.MethodA retrospective documentation review of patients identified as having a delirium for the twelve months February (...) 2013 to January 2014 was undertaken. Inclusion and exclusion criteria were used; demographic and descriptive data collected. A total of n=1153 patients were identified with n=310 meeting inclusion criteria.ResultA random sample of one hundred patients were subsequently reviewed. One third of patients had documentation relating to consent, while four patients had documentation relating to capacity. Median delirium duration was three days, with treatment refusal occurring in twenty-two patients and “duty of care” being used as an apparent beneficent related treatment framework in twelve patients.ConclusionsWhile impaired decision-making was indicated, the review was unable to indicate what patient characteristics flag the need for capacity assessment. Documentation relating to consent processes appeared deficient for this cohort. (shrink)

In euthanasia and/or assisted suicide of persons with dementia, the controversy has mostly focused on decisionally incapable persons with very advanced dementia for whom the procedure must be based on a written advance euthanasia directive. This focus on advance euthanasia directive-based EAS has been accompanied by scant attention to the issue of decision-making capacity assessment of persons with dementia who are being evaluated for concurrent request EAS. We build on a previous analysis of concurrent request EAS cases from the Netherlands, (...) which showed that many such cases involve persons with significant cognitive impairment. We use illustrative cases to describe the difficulty of determining decisional capacity in persons whose stage of dementia falls between severely impaired and mildly impaired. We show that the Dutch practice of capacity assessment in such dementia cases is difficult to reconcile with the widely accepted functional model of capacity—a model explicitly endorsed by the Dutch euthanasia review committees. We discuss why such deviations from the standard functional model might be occurring, as well as their ethical implications for dementia EAS policy and practice. (shrink)

Forensic science and its influence on policing and the criminal justice system have increased since the beginning of the twentieth century. While the philosophies of the forensic science pioneers remain the pillar of modern practice, rapid advances in technology and the underpinning sciences have seen an explosion in the number of disciplines and tools. Consequently, the way in which we exploit and interpret the remnant of criminal activity are adapting to this changing environment. In order to best exploit the trace, (...) an interdisciplinary approach to both research and investigation is required. In this paper, nine postdoctoral research fellows from a multidisciplinary team discuss their vision for the future of forensic science at the crime scene, in the laboratory and beyond. This paper does not pretend to be exhaustive of all fields of forensic science, but describes a portion of the postdoctoral fellows’ interests and skills. (shrink)

Heterogeneity within MDD has hampered identification of biological markers (e.g., intermediate phenotypes, IPs) that might increase risk for the disorder or reflect closer links to the genes underlying the disease process. The newer characterizations of dimensions of MDD within Research Domain Criteria (RDoC) domains may align well with the goal of defining IPs. We compare a sample of 25 individuals with MDD compared to 29 age and education matched controls in multimodal assessment. The multimodal RDoC assessment included the primary IP (...) biomarker, positron emission tomography (PET) with a selective radiotracer for 5-HT1A ([11C]WAY-100635), as well as event-related functional MRI with a Go/No-go task targeting the Cognitive Control network, neuropsychological assessment of affective perception, negative memory bias and Cognitive Control domains. There was also an exploratory genetic analysis with the serotonin transporter (5-HTTLPR) and monamine oxidase A (MAO-A) genes. In regression analyses, lower 5-HT1A binding potential (BP) in the MDD group was related to diminished engagement of the Cognitive Control network, slowed resolution of interfering cognitive stimuli, one element of Cognitive Control. In contrast, higher/normative levels of 5-HT1A BP in MDD (only) was related to a substantial memory bias toward negative information, but intact resolution of interfering cognitive stimuli and greater engagement of Cognitive Control circuitry. The serotonin transporter risk allele was associated with lower 1a BP and the corresponding imaging and cognitive IPs in MDD. Lowered 5HT 1a BP was present in half of the MDD group relative to the control group. Lowered 5HT 1a BP may represent a subtype including decreased engagement of Cognitive Control network and impaired resolution of interfering cognitive stimuli. Future investigations might link lowered 1a BP to neurobiological pathways and markers, as well as probing subtype-specific treatment targets. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Video‐recording healthcare interactions provides important opportunities for research and service improvement. However, this method brings about tensions, especially when recording sensitive topics. Subsequent reflection may compel the researcher to engage in ethical and moral deliberations. This paper presents experiences from a South African genetic counselling study which made use of video‐recordings to understand communicative processes in routine practice. Video‐recording as a research method, as well as contextual and process considerations are discussed, such as researching one's own field, issues of trust (...) and anonymity, the challenge of providing true informed consent and capturing details which may cause psychological harm. Several recommendations for research practice in diverse healthcare settings are made. This includes the value of reflective pieces, the importance of retrospective consent, disclosure of the limitations to anonymity, as well as the collective responsibility of those involved to produce ethical research. These recommendations have value for genetic counselling and other healthcare fields. (shrink)

Calls for the “translation” of research from bench to bedside are increasingly demanding. What is translation, and why does it matter? We sketch the recent history of outcome-oriented translational research in the United States, with a particular focus on the Roadmap Initiative of the National Institutes of Health (Bethesda, MD). Our main example of contemporary translational research is stem cell research, which has superseded genomics as the translational object of choice. We explore the nature of and obstacles to translational research (...) and assess the ethical and biomedical challenges of embracing a translational ethos. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)