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BACKGROUND: Levels of care deemed as inappropriate generate moral distress among nurses and other intensive care professionals. Inappropriate levels of care and related moral distress are frequently broached as individual and psychological phenomena, reduced to how individuals feel and think about specific cases. However, this tends to obscure the complex context in which these situations occur, and on which healthcare professionals can act. There is thus a need for a more contextual and team-level lens on inappropriate levels of care. RESEARCH OBJECTIVE: This study aims to explore and understand the issue of inappropriate levels of care in an intensive care unit (ICU) through a contextual and team-level lens. RESEARCH DESIGN: Semi-structured interviews were conducted with nurses, respiratory therapists, and intensivists. Thematic analysis focused on understanding the causes and consequences of inappropriate levels of care, as well as potential avenues for improvement. This study is part of a 5-phase participatory living lab project on inappropriate levels of care conducted in the ICU of a Montreal (Quebec, Canada) hospital. This paper relates the initial phases of the project, focusing on understanding the issue, with reported events spanning from June 2022 to May 2023. ETHICAL CONSIDERATIONS: Ethics approval was sought and granted by the Research Ethics Board of the CIUSSS de l'Est-de-l'Île-de-Montréal. FINDINGS/DISCUSSION: Five broad themes intrinsically related to the phenomenon of inappropriate levels of care were explored with and by participants: (1) the process of determining levels of care, (2) the distinction between appropriate and inappropriate levels of care, (3) causes of inappropriate levels of care, (4) consequences of inappropriate levels of care and (5) potential avenues for improvement. CONCLUSION: This research provides a comprehensive understanding of inappropriate levels of care in the ICU and emphasizes the relevance of team-level explorations of complex ethical issues.
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Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.
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Princípios Morais , Humanos , Filosofia MédicaRESUMO
Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion-oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É-LABO, we approach challenges as learning opportunities to ask not only "how" questions but also "why" questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics.
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BACKGROUND: Rare diseases are generally poorly understood from scientific and medical standpoints due, to their complexity and low prevalence. As a result, individuals living with rare diseases struggle to obtain timely diagnoses and suitable care. These clinical difficulties add to the physical and psychological impacts of living with chronic and often severe medical conditions. From the standpoint of pragmatist ethics, the morally problematic situations that adults living with rare diseases experience matter crucially. However, there is little known about these experiences. METHODS: A survey study was conducted with 121 adults living with rare diseases in Québec, Canada, to identify morally problematic situations encountered in the healthcare system and everyday life as part of a participatory action research project. Morally problematic situations elicited internal tensions and constraints to agency. RESULTS: Adults living with rare diseases experienced morally problematic situations of stigmatization, disbelief, and sometimes abuse in the healthcare system. These situations were compounded by diagnostic delays, inadequate care, and suboptimal follow-up, and led some individuals to opt-out of medical care. In their personal lives, these individuals sometimes found themselves in situations of physical and financial dependency. They often also had to give up professional occupations, academic training, or life projects. CONCLUSIONS: Adults living with rare diseases experience important morally problematic situations navigating the healthcare system and their everyday lives, some of which could be alleviated through interventions developed through future participatory action research.
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BACKGROUND: Transition from paediatric to adult care is challenging for youths with a chronic condition. Most transition programmes place high value in autonomy and independence. We undertook a qualitative study to: (1) identify the needs and aspirations of youths and (2) better understand the well-being and flourishing of youths. METHODS: Semi-structured interviews were conducted with youths, parents of youths and healthcare professionals recruited from four clinics. Thematic analysis focused on: (1) perceptions of transition; (2) key aspects of human flourishing during transition; and (3) salient concerns with respect to the transition and dimensions of human flourishing. RESULTS: 54 interviews were conducted. Perceptions of transition clustered around: (1) apprehension about adult care; (2) lack of clarity about the transition process; (3) emotional attachment to paediatric healthcare professionals; (4) the significance of the coinciding transition into adulthood. Fourteen salient concerns (e.g., Knowledge and information about the transition, Parental involvement in healthcare) were identified with corresponding recommendations. Salient concerns related to important dimensions of human flourishing (e.g., environmental mastery, autonomy). DISCUSSION AND CONCLUSION: The flourishing of youths is affected by suboptimal transition practices. We discuss the implications of our findings for environmental mastery, contextual autonomy, and the holistic and humanistic aspects of transition.
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Transição para Assistência do Adulto , Adolescente , Humanos , Adulto , Criança , Atenção à Saúde , Pais/psicologia , Pessoal de Saúde , Pesquisa QualitativaRESUMO
BACKGROUND: Owing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral challenges by patients, jeopardizing their life trajectories, dreams, and aspirations. OBJECTIVE: This paper presents an ethical action plan for rare disease care and the process underlying its development. METHODS: This action plan was designed through an ethical inquiry conducted by the Ethics and Rare Diseases Working Group, which included 3 patient partners, 2 clinician researchers, and 1 representative from Québec's rare disease association. RESULTS: The plan is structured into 4 components. Component A presents the key moral challenges encountered by patients, which are the lack of knowledge on rare diseases among health care workers, the problematic attitudes that it sometimes elicits, and the distress and powerlessness experienced by patients. Component B emphasizes a vision for patient partnership in rare disease care characterized by open-mindedness, empathy, respect, and support of patient autonomy from health care workers. Component C outlines 2 courses of action prompted by this vision: raising awareness among health care workers and empowering patients to better navigate their care. Component D compares several interventions that could help integrate these 2 courses of action in rare disease care. CONCLUSIONS: Overall, this action plan represents a toolbox that provides a review of multiple possible interventions for policy makers, hospital managers, practitioners, researchers, and patient associations to critically reflect on key moral challenges experienced by patients with rare diseases and ways to mitigate them. This paper also prompts reflection on the values underlying rare disease care, patient experiences, and health care workers' beliefs and behaviors. Health care workers and patients were the primary beneficiaries of this action plan.
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BACKGROUND: Medical assistance in dying (MAiD) sparks debate in several countries, some of which allow or plan to allow MAiD where a mental disorder is the sole underlying medical condition (MAiD-MD). Since MAiD-MD is becoming permissible in a growing number of jurisdictions, there is a need to better understand the moral concerns related to this option. Gaining a better understanding of the moral concerns at stake is a first step towards identifying ways of addressing them so that MAiD-MD can be successfully introduced and implemented, where legislations allow it. METHODS: Thus, this article aims (1) to better understand the moral concerns regarding MAiD-MD, and (2) to identify potential solutions to promote stakeholders' well-being. A qualitative thematic review was undertaken, which used systematic keyword-driven search and thematic analysis of content. Seventy-four publications met the inclusion criteria. RESULTS: Various moral concerns and proposed solutions were identified and are related to how MAiD-MD is introduced in 5 contexts: (1) Societal context, (2) Healthcare system, (3) Continuum of care, (4) Discussions on the option of MAiD-MD, (5) MAiD-MD practices. We propose this classification of the identified moral concerns because it helps to better understand the various facets of discomfort experienced with MAiD-MD. In so doing, it also directs the various actions to be taken to alleviate these discomforts and promote the well-being of stakeholders. CONCLUSION: The assessment of MAiD-MD applications, which is part of the context of MAiD-MD practices, emerges as the most widespread source of concern. Addressing the moral concerns arising in the five contexts identified could help ease concerns regarding the assessment of MAiD-MD.
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Transtornos Mentais , Transtornos Psicóticos , Suicídio Assistido , Humanos , Canadá , Assistência Médica , Princípios MoraisRESUMO
Introduction: Transition from pediatric to adult healthcare is a multifaceted and consequential process with important health implications for youth. Although research on transition has grown significantly, research on transition for patients living with an inborn error of immunity (IEI) is scarce. We undertook a qualitative study to better understand the perspectives of youths and parents in an outpatient immunology clinic. Methdos: Semi-structured interviews were conducted with 9 youths, 6 parents and 5 clinicians, all recruited from the same clinic. All youths recently transferred to adult care with or without an established diagnosis of IEI. Interviews were transcribed verbatim and thematic analysis was conducted. Two sets of themes were generated. The first set captured the positive and negative aspects experienced during transition, as well as recommendations to facilitate the process. The second set focused on key topics discussed in the interviews that were merged into overarching themes. Results: Perspectives of participants were clustered into 6 overarching themes: (1) lack of knowledge about IEIs; (2) scattered transitions; (3) changing healthcare teams; (4) approaching an unknown environment; (5) transitioning to adulthood; (6) assuming responsibility for the management of the condition. Overall, the challenges encountered with respect to these themes had profound clinical and humanistic implications for patients such as generating significant distress. Discussion: We discuss the unique challenges of the youths in our study in comparison to common problems reported by youths with chronic illness in the broader transition literature (for example: the change of healthcare team, the lack of information about the transition process and navigating the adult care system, growth towards self-management and the co-occurring developmental transition to adulthood). There is an urgency to attend to the specific problems created by the rarity of IEIs and related lack of knowledge about them as well as the need for multidisciplinary cross-clinic care during transition and beyond.
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Pacientes Ambulatoriais , Pais , Adolescente , Adulto , Criança , Humanos , Equipe de Assistência ao Paciente , Transição para Assistência do AdultoRESUMO
Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth understanding of morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences.
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Socially assistive robots are being developed and tested to support social interactions and assist with healthcare needs, including in the context of dementia. These technologies bring their share of situations where moral values and principles can be profoundly questioned. Several aspects of these robots affect human relationships and social behavior, i.e., fundamental aspects of human existence and human flourishing. However, the impact of socially assistive robots on human flourishing is not yet well understood in the current state of the literature. We undertook a scoping review to study the literature on human flourishing as it relates to health uses of socially assistive robots. Searches were conducted between March and July 2021 on the following databases: Ovid MEDLINE, PubMed and PsycINFO. Twenty-eight articles were found and analyzed. Results show that no formal evaluation of the impact of socially assistive robots on human flourishing in the context of dementia in any of the articles retained for the literature review although several articles touched on at least one dimension of human flourishing and other related concepts. We submit that participatory methods to evaluate the impact of socially assistive robots on human flourishing could open research to other values at stake, particularly those prioritized by people with dementia which we have less evidence about. Such participatory approaches to human flourishing are congruent with empowerment theory.
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OBJECTIVE: Deep brain stimulation (DBS) and whether it alters patient personality is a much-debated topic within academic literature, yet rarely explored with those directly involved. This study qualitatively examined how DBS for treatment-resistant depression impacts patient personality, self-concept, and relationships from the perspectives of both patients and caregivers. METHODS: A prospective qualitative design was used. Eleven participants were included (six patients, five caregivers). Patients were enrolled in a clinical trial of DBS of the bed nucleus of the stria terminalis. Semi-structured interviews were conducted with participants before DBS-implantation and 9-months after stimulation-initiation. The 21 interviews were thematically analysed. RESULTS: Three primary themes were identified: (a) impact of mental illness and treatment on self-concept; (b) device acceptability and usability, and (c) relationships and connection. Severe refractory depression had profoundly impacted who patients were, how they viewed themselves, and the quality and functioning of their relationships. Patients who benefited from DBS felt reconnected with their premorbid self, yet still far from their ideal self. While reductions in depression were broadly beneficial for relationships, the process of adjusting relationship dynamics created new challenges. All patients reported recharging difficulties and challenges adapting to the device. CONCLUSIONS: Therapeutic response to DBS is a gradual and complex process that involves an evolving self-concept, adjusting relationship dynamics, and growing connection between body and device. This is the first study to provide in-depth insight into the lived experience of DBS for treatment-resistant depression. Patient and caregiver narrative accounts should be routinely collected to guide more person-centred DBS clinical interventions.
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Estimulação Encefálica Profunda , Transtorno Depressivo Resistente a Tratamento , Humanos , Cuidadores , Depressão/terapia , Transtorno Depressivo Resistente a Tratamento/terapia , Estudos Prospectivos , Pesquisa QualitativaRESUMO
Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease that leads some people with the disease to consider medical assistance in dying (MAiD). In this article, we describe how a variety of moral problems can emerge from this particular context and affect the well-being of people with ALS, their loved ones, and their caregivers. As MAiD is framed by specific eligibility criteria, broadening its eligibility is often proposed to address these issues. This critical review of the literature aims to identify moral issues relating to ALS that may persist or arise in the event of such widening. The MEDLINE, EMBASE CINAHL and Web of Science databases were searched using 4 search combinations to capture insights from existing literature on ethics, MAiD and ALS (N=41). A thematic content analysis highlighted 3 contextual categories where moral issues emerge (the experience of the disease, the choice of how to die, and the implementation of MAiD). Two important observations are discussed: 1) there are differences in perspective between stakeholders, which can lead to disagreement, but some similarities of perspective also exist; 2) the widening of MAiD eligibility mainly concerns moral issues related to the choice of how to die, and thus constitutes a partial solution to the problems identified.
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Esclerose Lateral Amiotrófica , Doenças Neurodegenerativas , Suicídio Assistido , Humanos , Princípios Morais , Assistência MédicaRESUMO
Invasive brain-computer interfaces hold promise to alleviate disabilities in individuals with neurologic injury, with fully implantable brain-computer interface systems expected to reach the clinic in the upcoming decade. Children with severe neurologic disabilities, like quadriplegic cerebral palsy or cervical spine trauma, could benefit from this technology. However, they have been excluded from clinical trials of intracortical brain-computer interface to date. In this manuscript, we discuss the ethical considerations related to the use of invasive brain-computer interface in children with severe neurologic disabilities. We first review the technical hardware and software considerations for the application of intracortical brain-computer interface in children. We then discuss ethical issues related to motor brain-computer interface use in pediatric neurosurgery. Finally, based on the input of a multidisciplinary panel of experts in fields related to brain-computer interface (functional and restorative neurosurgery, pediatric neurosurgery, mathematics and artificial intelligence research, neuroengineering, pediatric ethics, and pragmatic ethics), we then formulate initial recommendations regarding the clinical use of invasive brain-computer interfaces in children.
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Interfaces Cérebro-Computador , Pessoas com Deficiência , Neurocirurgia , Criança , Humanos , Inteligência Artificial , Procedimentos NeurocirúrgicosRESUMO
BACKGROUND: The COVID-19 pandemic has created a global health crisis, leading to stigmatization and discriminatory behaviors against people who have contracted or are suspected of having contracted the virus. Yet the causes of stigmatization in the context of COVID-19 remain only partially understood. Using attribution theory, we examine to what extent attributes of a fictitious person affect the formation of stigmatizing attitudes towards this person, and whether suspected COVID-19 infection (vs. flu) intensifies such attitudes. We also use the familiarity hypothesis to explore whether familiarity with COVID-19 reduces stigma and whether it moderates the effect of a COVID-19 infection on stigmatization. METHODS: We conducted a multifactorial vignette survey experiment (28-design, i.e., NVignettes = 256) in Germany (NRespondents = 4,059) in which we experimentally varied signals and signaling events (i.e., information that may trigger stigma) concerning a fictitious person in the context of COVID-19. We assessed respondents' cognitive (e.g., blameworthiness) and affective (e.g., anger) responses as well as their discriminatory inclinations (e.g., avoidance) towards the character. Furthermore, we measured different indicators of respondents' familiarity with COVID-19. RESULTS: Results revealed higher levels of stigma towards people who were diagnosed with COVID-19 versus a regular flu. In addition, stigma was higher towards those who were considered responsible for their infection due to irresponsible behavior. Knowing someone who died from a COVID infection increased stigma. While higher self-reported knowledge about COVID-19 was associated with more stigma, higher factual knowledge was associated with less. CONCLUSION: Attribution theory and to a lesser extent the familiarity hypothesis can help better understand stigma in the context of COVID-19. This study provides insights about who is at risk of stigmatization and stigmatizing others in this context. It thereby allows identifying the groups that require more support in accessing healthcare services and suggests that basic, factually oriented public health interventions would be promising for reducing stigma.
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COVID-19 , Estereotipagem , Humanos , Pandemias , Estigma Social , Inquéritos e QuestionáriosRESUMO
Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease that leads some people with the disease to consider medical assistance in dying (MAiD). In this article, we describe how a variety of moral problems can emerge from this particular context and affect the well-being of people with ALS, their loved ones, and their caregivers. As MAiD is framed by specific eligibility criteria, broadening its eligibility is often proposed to address these issues. This critical review of the literature aims to identify moral issues relating to ALS that may persist or arise in the event of such widening. The MEDLINE, EMBASE CINAHL and Web of Science databases were searched using 4 search combinations to capture insights from existing literature on ethics, MAiD and ALS (N=41). A thematic content analysis highlighted 3 contextual categories where moral issues emerge (the experience of the disease, the choice of how to die, and the implementation of MAiD). Two important observations are discussed: 1) there are differences in perspective between stakeholders, which can lead to disagreement, but some similarities of perspective also exist; 2) the widening of MAiD eligibility mainly concerns moral issues related to the choice of how to die, and thus constitutes a partial solution to the problems identified.
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Esclerose Lateral Amiotrófica , Doenças Neurodegenerativas , Suicídio Assistido , Humanos , Princípios Morais , Assistência MédicaRESUMO
AIM: We examined physicians' perspectives on the mental capabilities of pediatric patients with unresponsive wakefulness syndrome (UWS) and their attitudes towards limiting life-sustaining treatment (LST) in an international context. METHOD: A questionnaire survey was conducted among 267 neuropediatricians, practicing in 65 countries. Comparisons were made according to the Human Development Index (HDI) of the countries. The Idler Index of Religiosity was applied to determine religiosity. RESULTS: Participants from countries with a very high HDI were generally more favorable to limiting LST (p < 0.001), specifically cardiopulmonary resuscitation (p = 0.021), intubation/ventilation (p = 0.014), hemodialysis/hemofiltration (p < 0.001), and antibiotic therapy (p < 0.001). Treatment costs that were too high had a weaker influence on their decisions (p < 0.001). Participants who found it never ethically justifiable to limit LST had a higher mean Idler Index of private (p = 0.001) and general (p = 0.020) religiosity and were less satisfied with treatment decisions (p < 0.001) and the communication during the process (p = 0.016). INTERPRETATION: The perspectives towards limiting LST for pediatric patients with UWS are markedly different between physicians from countries with very high and lower HDIs.
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Médicos , Assistência Terminal , Humanos , Criança , Vigília , Inquéritos e Questionários , Comunicação , Morte , Tomada de DecisõesRESUMO
The work of public safety personnel (PSP; e.g. firefighters, police officers, and paramedics, among others) is essential to society but is practically and ethically complex, especially with the increased challenges posed by the COVID-19 pandemic. The strain on mental health in this population of workers and volunteers has been the focus of recent research. New programs and strategies are being developed and implemented in order to address the causes and implications of mental health problems at the individual and organizational levels in Canada and elsewhere. Yet, the properly ethical aspects of the work and work conditions of PSP have largely fallen outside the scope of public health research. There are few empirical studies on moral distress and moral injury of Canadian PSP, and the rich and complex moral life of these workers is often obfuscated by a pervasive, stoic, militaristic moral model that generally aligns with narrow biomedical treatment approaches. We argue that the lack of attention to the public, social, and ethical aspects of the moral distress and moral injuries experienced by PSP in Canada warrants greater public and academic awareness, more research on experiences of moral distress and moral injury in PSP, and evidence-informed training and support programs for individuals and organizations.
RéSUMé: Le travail du personnel de la sécurité publique (PSP; incluant, entre autres, les pompiers.ères, les officiers.ères de police, les ambulanciers.ères paramédicaux) est essentiel à la société, mais il est complexe sur le plan pratique et éthique, en particulier avec les défis accrus posés par la pandémie de COVID-19. La pression exercée sur la santé mentale de cette population de travailleurs et de bénévoles a fait l'objet de recherches récentes. De nouveaux programmes et des stratégies sont élaborés et mis en Åuvre afin de s'attaquer aux causes et aux répercussions des problèmes de santé mentale aux niveaux individuel et organisationnel au Canada et ailleurs. Pourtant, les aspects proprement éthiques du travail et des conditions de travail du PSP sont peu abordés dans la recherche en santé publique. Il existe peu d'études empiriques sur la détresse morale et les blessures morales du PSP canadien, et la vie morale riche et complexe de ces travailleurs est souvent obscurcie par un modèle moral omniprésent, stoïque et militariste qui s'aligne généralement sur des approches de traitement biomédicales étroites. Nous soutenons que le manque d'attention aux aspects publics, sociaux et éthiques de la détresse morale et des blessures morales subies par le PSP au Canada justifie une plus grande sensibilisation du public et des universitaires, plus de recherche sur les expériences de détresse morale et de blessures morales chez le PSP, et des programmes de formation et de soutien individuels et organisationnels éclairés par des données probantes.
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COVID-19 , Transtornos de Estresse Pós-Traumáticos , Humanos , Pandemias , Canadá , COVID-19/epidemiologia , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Saúde MentalRESUMO
As brain-computer interfaces are promoted as assistive devices, some researchers worry that this promise to "restore" individuals worsens stigma toward disabled people and fosters unrealistic expectations. In three web-based survey experiments with vignettes, we tested how refusing a brain-computer interface in the context of disability affects cognitive (blame), emotional (anger), and behavioral (coercion) stigmatizing attitudes (Experiment 1, N = 222) and whether the effect of a refusal is affected by the level of brain-computer interface functioning (Experiment 2, N = 620) or the risk of malfunctioning (Experiment 3, N = 620). We found that refusing a brain-computer interface increased blame and anger, while brain-computer interface functioning did change the effect of a refusal. Higher risks of device malfunctioning partially reduced stigmatizing attitudes and moderated the effect of refusal. This suggests that information about disabled people who refuse a technology can increase stigma toward them. This finding has serious implications for brain-computer interface regulation, media coverage, and the prevention of ableism.
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Interfaces Cérebro-Computador , Humanos , Estigma Social , Atitude , Tecnologia , EmoçõesRESUMO
When the Act Respecting End-of-Life Care came into effect in Quebec in 2015, nearly 30 Interdisciplinary Support Groups (ISGs) were formed to accompany practitioners and managers in the clinical, administrative, legal, and ethical practice of Medical Assistance in Dying (MAiD). Today, significant variability is observed in the constitution, role and functioning of ISGs. Based on an overview of national and international support structures, we highlight the strengths and challenges of ISGs. This article presents the results of the first phase of research conducted with 245 people involved in the practice of MAiD in Quebec. The objective is to survey current ISG practices in order to contrast them with those of equivalent structures in Canada and around the world. The intention is to guide leaders in the development of support structures for their institutions. In summary, ISGs are distinguished by their interdisciplinary constitution, their decentralized nature, and their proximity to the teams in the field. However, their service offer remains largely unknown to caregivers and the general population. This can be explained by the undefined and unlimited nature of their mandate, but also by the gap between the scope of their mandate and the lack of funding they receive.