A Patient-Centered Perspective on Changes in Personal Characteristics After Deep Brain Stimulation.

Importance: Deep brain stimulation (DBS) results in improvements in motor function and quality of life in patients with Parkinson disease (PD), which might impact a patient's perception of valued personal characteristics. Prior studies investigating whether DBS causes unwanted changes to oneself or one's personality have methodological limitations that should be addressed. Objective: To determine whether DBS is associated with changes in characteristics that patients with PD identify as personally meaningful. Design, Setting, and Participants: This cohort study assessed changes in visual analog scale (VAS) ratings reflecting the extent to which patients with PD manifested individually identified personal characteristics before and 6 and 12 months after DBS at a large academic medical center from February 21, 2018, to December 9, 2021. The VAS findings were tailored to reflect the top 3 individually identified personal characteristics the patient most feared losing. The VASs were scored from 0 to 10, with 0 representing the least and 10 the most extreme manifestation of the trait. Change scores were examined at the individual level. Content analysis was used to code the qualitative data. Qualitative and quantitative analyses were performed from January 12, 2019 (initial qualitative coding), to December 15, 2023. Exposure: Deep brain stimulation. Main Outcomes and Measures: The primary outcome variable was the mean VAS score for the top 3 personal characteristics. The secondary outcome was the incidence of meaningful changes on the patients' top 3 characteristics at the individual level. Results: Fifty-two of 54 dyads of patients with PD and their care partners (96.3%) were recruited from a consecutive series approved for DBS (36 patients [69.2%] were male and 45 care partners [86.5%] were female; mean [SD] age of patients, 61.98 [8.55] years). Two patients and 1 care partner were lost to follow-up. Increases in the mean VAS score (indicative of greater manifestation of [ie, positive changes in] specific characteristics) were apparent following DBS for ratings of both the patients (Wald χ2 = 16.104; P < .001) and care partners (Wald χ2 = 6.746; P < .001) over time. The slopes of the changes for both the patient and care partners were correlated, indicating agreement in observed changes over time. The individual level analyses indicated that scores for most patients and care partners remained the same or increased. Conclusions and Relevance: In this cohort study, participants reported greater (more positive) manifestations of individually identified, valued characteristics after DBS. These findings may be relevant to informing decision-making for patients with advanced PD who are considering DBS.

Setting Expectations for Ethics Theory from the Standpoint of the User.

Ethics theory is highly valued to the point that some commentators have claimed that it has taken on a life of its own, with too much focus on the justification of moral judgment and not enough on the needs of users of such theory. Building from various personal experiences of interdisciplinary ethics collaborative developments and empirical research projects, the wisdom gleaned by others, as well as insights from pragmatist theory, this article offers five (non-exhaustive) expectations for ethics theory from the standpoint of a user. The article is intended to prompt broad reflection on expectations toward ethics theory and why user perspectives should be considered early in the development of ethics scholarship.

Medical Assistance in Dying in Quebec: A Continuum Between Teams' Accountability and Interdisciplinary Support Groups' Assumption of Responsibility.

Objectives: In the province of Quebec, Canada, interdisciplinary support groups (ISGs) are mandated to support those who are involved in the clinical, administrative, legal and ethical aspects of medical assistance in dying (MAiD). This article presents the results of a mixed-method, multi-phase study carried out in 2021 on ISGs with the aim to describe current ISG practices, critically analyze them and make recommendations on promising practices for provincial implementation. Method: Semi-structured interviews (42) and focus groups (7) with coordinators of 24 ISGs were used to identify promising practices and confirm their utility with participants. Results: We have distributed the ISGs along what we coined an "ISG continuum." Between teams' accountability (decentralization) and ISGs' assumption of responsibility for MAiD requests (centralization), a middle ground approach, focused on the value of support, should be favored. Conclusion: The structuring of ISGs and their practices is intimately linked to their values. Harmonization of ISGs and their practices, while considering their specific values and contexts, can contribute to the equity and quality of services intended for those who request MAiD and those who support them.

Exploring inappropriate levels of care in intensive care.

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.

Living ethics: a stance and its implications in health ethics.

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.

Developing a living lab in ethics: Initial issues and observations.

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.

Morally Problematic Situations Encountered by Adults Living With Rare Diseases.

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.

Transition from Paediatric to adult health services: Aspirations and practices of human flourishing.

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.

An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach.

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.

Medical assistance in dying for people living with mental disorders: a qualitative thematic review.

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.

Transitioning from pediatric to adult healthcare with an inborn error of immunity: a qualitative study of the lived experience of youths and their families.

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.

Understanding Rare Disease Experiences Through the Concept of Morally Problematic Situations.

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.

The Impact of Socially Assistive Robots on Human Flourishing in the Context of Dementia: A Scoping Review.

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.

Use of Invasive Brain-Computer Interfaces in Pediatric Neurosurgery: Technical and Ethical Considerations.

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.

Chapitre 7. Les enjeux de l'aide médicale à mourir en contexte de sclérose latérale amyotrophique : une revue de la littérature.

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.

Personal and relational changes following deep brain stimulation for treatment-resistant depression: A prospective qualitative study with patients and caregivers.

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.

Chapitre 7. Les enjeux de l'aide médicale à mourir en contexte de sclérose latérale amyotrophique : une revue de la littérature.

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.

Stigmatization in the context of the COVID-19 pandemic: a survey experiment using attribution theory and the familiarity hypothesis.

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.