Care considerations in medical assistance in dying for persons with mental illness as the sole underlying medical condition: a qualitative study of patient and family perspectives.

BACKGROUND: Persons with mental illness as their sole underlying medical condition are eligible to access medical assistance in dying (MAiD) in a small number of countries, including Belgium, the Netherlands, Luxemburg and Switzerland. In Canada, it is anticipated that people experiencing mental illness as their sole underlying medical condition (MI-SUMC) will be eligible to request MAiD as of March 17th 2024. To date, few studies have addressed patient and family perspectives on MAiD MI-SUMC care processes. This study aimed to address this gap and qualitatively explore the perspectives of persons with lived experience of mental illness and family members on care considerations during MI-SUMC implementation. METHODS: Thirty adults with lived experience of mental illness and 25 adult family members residing in Ontario participated in this study. To facilitate participant engagement, the semi-structured interview used a persona-scenario exercise to discuss perspectives on MAiD MI-SUMC acceptability and care considerations. Framework analysis was used to inductively analyze data using NVivo 12 Pro. Steps, processes, or other care considerations suggested by the participants were charted in a framework matrix after familiarization with the narratives. Key themes were further identified. A lived-experience advisory group participated in every aspect of this study. RESULTS: Six themes were developed from the patient and family narratives: (1) Raising MAiD MI-SUMC awareness; (2) Sensitive Introduction of MAiD MI-SUMC in goals of care discussions; (3) Asking for MAiD MI-SUMC: a person-focused response; (4) A comprehensive circle of MAiD MI-SUMC care; (5) A holistic, person-centered assessment process; and (6) Need for support in the aftermath of the decision. These themes highlighted a congruence of views between patient and family members and described key desired process ingredients, including a person-centred non-judgmental stance by care providers, inter-professional holistic care, shared decision making, and the primacy of patient autonomy in healthcare decision making. CONCLUSIONS: Family and patient perspectives on the implementation of MAiD MI-SUMC offer important considerations for service planning that could complement existing and emerging professional practice standards. These stakeholders' perspectives will continue to be essential in MAiD MI-SUMC implementation efforts, to better address the needs of diverse communities and inform improvement efforts.

Understanding attitudes and beliefs regarding COVID-19 vaccines among transitional-aged youth with mental health concerns: a youth-led qualitative study.

BACKGROUND: Transitional-aged youth (16-29 years) with mental health concerns have experienced a disproportionate burden of the COVID-19 pandemic. Vaccination is limited in this population; however, determinants of its vaccine hesitancy are not yet thoroughly characterised. OBJECTIVES: This study aimed to answer the following research question: What are the beliefs and attitudes of youth with mental illness about COVID-19 vaccines, and how do these perspectives affect vaccine acceptance? The study aims to generate findings to inform the development of vaccine resources specific to youth with mental health concerns. METHODS: A qualitative methodology with a youth engagement focus was used to conduct in-depth semistructured interviews with transitional-aged youth aged 16-29 years with one or more self-reported mental health diagnoses or concerns. Mental health concerns encompassed a wide range of symptoms and diagnoses, including mood disorders, anxiety disorders, neurodevelopmental disorders and personality disorders. Participants were recruited from seven main mental health clinical and support networks across Canada. Transcripts from 46 youth and 6 family member interviews were analysed using thematic analysis. RESULTS: Two major themes were generated: (1) factors affecting trust in COVID-19 vaccines and (2) mental health influences and safety considerations in vaccine decision-making. Subthemes included trust in vaccines, trust in healthcare providers, trust in government and mistreatment towards racialised populations, and direct and indirect influences of mental health. CONCLUSIONS: Our analysis suggests how lived experiences of mental illness affected vaccine decision-making and related factors that can be targeted to increase vaccine uptake. Our findings provide new insights into vaccine attitudes among youth with mental health concerns, which is highly relevant to ongoing vaccination efforts for new COVID-19 strains as well as other transmissible diseases and future pandemics. Next steps include cocreating youth-specific public health and clinical resources to encourage vaccination in this population.

Mapping MAiD Discordance: A Qualitative Analysis of the Factors Complicating MAiD Bereavement in Canada.

Medical assistance in dying (MAiD) is an evolving practice in Canada, with requests and outcomes increasing each year, and yet controversy is present-with a vast spectrum of ethical positions on its permissibility. International research indicates that family members who experience disagreement over their loved one's decision to have MAiD are less likely to be actively involved in supporting patients through the practical aspects of the dying process. Family members with passive involvement in the assisted dying process may also experience more significant moral dilemmas and challenging grief experiences than those who supported the decision. Given these previous findings, we designed this study to explore the factors complicating family members' experiences with MAiD in Canada and to understand how these complicating factors impact family members' bereavement in the months and years following MAiD. We conducted narrative interviews with 12 MAiD-bereaved family members who experienced disagreements, family conflicts, or differences in understanding about MAiD. Documenting and analyzing participants' experiences through storytelling allowed us to appreciate the complexity of family members' experiences and understand their values. The analysis generated five factors that can complicate the MAiD process and bereavement for family members: family discordance, internal conflict, legislative and eligibility concerns, logistical challenges, and managing disclosure and negative reactions. To our knowledge, this is the first Canadian study that explores how family discordance can impact bereavement following MAiD. Future bereavement services and resources should consider how these complicating factors may impact bereavement and ensure that Canadians with diverse MAiD experiences can access appropriate support.

The Influence of Using Novel Predictive Technologies on Judgments of Stigma, Empathy, and Compassion among Healthcare Professionals.

BACKGROUND: Our objective was to evaluate whether the description of a machine learning (ML) app or brain imaging technology to predict the onset of schizophrenia or alcohol use disorder (AUD) influences healthcare professionals' judgments of stigma, empathy, and compassion. METHODS: We randomized healthcare professionals (N = 310) to one vignette about a person whose clinician seeks to predict schizophrenia or an AUD, using a ML app, brain imaging, or a psychosocial assessment. Participants used scales to measure their judgments of stigma, empathy, and compassion. RESULTS: Participants randomized to the ML vignette endorsed less anger and more fear relative to the psychosocial vignette, and the brain imaging vignette elicited higher pity ratings. The brain imaging and ML vignettes evoked lower personal responsibility judgments compared to the psychosocial vignette. Physicians and nurses reported less empathy than clinical psychologists. CONCLUSIONS: The use of predictive technologies may reinforce essentialist views about mental health and substance use that may increase specific aspects of stigma and reduce others.

Unacknowledged Pain and Disenfranchised Grief: A Narrative Analysis of Physical and Emotional Pain in Complex MAiD Bereavement Stories.

Background: Pain can influence an individual's choice to pursue medical assistance in dying (MAiD) and may also influence how family members experience that decision. Family conflict or discordance surrounding a loved one's MAiD decision can cause unique challenges affecting grief and bereavement, including disenfranchised grief. There is limited knowledge of how individuals with complex MAiD bereavement experiences describe the role of physical and emotional pain in their bereavement stories. Aims: This article explores the role of physical and emotional pain in the stories of family members with complex MAiD bereavement and identifies opportunities to improve care for individuals and families experiencing disagreement around MAiD. Methods: We conducted qualitative interviews and utilized a narrative and ethics of care approach to analyze the data. Results: We conducted N = 12 narrative interviews with participants in three provinces: Ontario, British Columbia, and Alberta. Descriptions of physical pain were used to justify the morality, or immorality, of MAiD in the context of patient suffering. Emotional pain described experiences where participants' feelings about MAiD went unacknowledged by their family or friends, institutions, and sociopolitical environments. We conceptualize this unacknowledged emotional pain as disenfranchised grief and make recommendations to improve care for individuals experiencing complex MAiD bereavement. Conclusions: Experiences of physical and emotional pain leave a lasting impact on family members with complex MAiD bereavement. Health care professionals should continue to improve care for family members following MAiD, especially where there is disagreement or family conflict.

Contexte: La douleur peut influencer le choix d'une personne de demander l'aide médicale à mourir (AMM) et peut également influencer la façon dont les membres de la famille vivent cette décision. Le conflit ou la discorde au sein de la famille entourant la décision d'un être cher d'avoir recours à l'AMM peut entrainer des difficultés en ce qui concerne le chagrin et au deuil, notamment le deuil privé de ses droits. La façon dont les individus vivant l'expérience complexe du deuil lié à l'AMM décrivent le rôle de la douleur physique et émotionnelle dans leur histoires de deuil est peu connue.Objectifs: Cet article se penche sur le rôle de la douleur physique et émotionnelle dans les histoires des membres de la famille vivant un deuil complexe lié à l'AMM et décrit les occasions d'améliorer les soins destinés aux individus et aux familles connaissant un désaccord autour de l'AMM.Méthodes: Nous avons mené des entretiens qualitatifs et utilisé une approche narrative axée sur l'éthique des soins pour analyser les données.Résultats: Nous avons mené N = 12 entretiens narratifs avec des participants de trois provinces : l'Ontario, la Colombie-Britannique et l'Alberta. Des descriptions de la douleur physique ont été utilisées pour justifier la moralité, ou l'immoralité, de l'AMM dans le cadre de la souffrance du patient. La douleur émotionnelle décrit l'expérience oo les sentiments des participants au sujet de l'AMM qui n'ont pas été reconnus par leur famille ou leurs amis, les institutions et l'environnement sociopolitique. Nous conceptualisons cette douleur émotionnelle non reconnue comme le deuil privé de ses droits et faisons des recommandations pour améliorer les soins pour les personnes qui vivent un deuil complexe lié à l'AMM.Conclusions: L'expérience de la douleur physique et émotionnelle a un effet durable sur les membres de la famille qui vivent un deuil complexe en lien avec l'AMM. Les professionnels de la santé devraient continuer à améliorer les soins destinés aux membres de la famille après l'AMM, en particulier en cas de désaccord ou de conflit familial.

Searching for relief from suffering: A patient-oriented qualitative study on medical assistance in dying for mental illness as the sole underlying medical condition.

Medical assistance in dying (MAiD) was introduced into Canadian legislation in 2016. Mental illness as the sole underlying medical condition (MI-SUMC) is excluded from eligibility; this is expected to change in 2024. Incurability, intolerable suffering, capacity to make healthcare decisions, and suicidality have been publicly debated in connection with mental illness. Few studies have explored the views of persons with mental illness on the introduction and acceptability of MAiD MI-SUMC; this study aimed to fill this gap. Thirty adults, residing in Ontario, Canada, who self-identified as living with mental illness participated. A semi-structured interview including a persona-scenario exercise was designed to discuss participants' views on MAiD MI-SUMC and when it could be acceptable or not. Reflexive thematic analysis was used to inductively analyze data. Codes and themes were developed after extensive familiarization with the dataset. A lived-experience advisory group was engaged throughout the study. We identified six themes: The certainty of suffering; Is there a suffering threshold to be met? The uncertainty of mental illness; My own limits, values, and decisions; MAiD MI-SUMCas acceptable when therapeutic means, and othersupports, have been tried to alleviate long-term suffering; and Between relief and rejection. These themes underline how the participants' lived experience comprised negative impacts caused by long-term mental illness, stigma, and in some cases, socioeconomic factors. The need for therapeutic and non-therapeutic supports was highlighted, along with unresolved tensions about the links between mental illness, capacity, and suicidality. Although not all participants viewed MAiD MI-SUMC as acceptable for mental illness, they autonomously embraced limits, values, and decisions of their own along their search for relief. Identifying individual and contextual elements in each person's experience of illness and suffering is necessary to understand diverse perspectives on MAiD MI-SUMC.

Commentary: Access to Psychedelics for Psychological Suffering at the End of Life - Prioritizing Our Priorities.

We agree with Kratina et al. (2023) that the problem of psychological suffering at the end of life deserves attention from a policy standpoint and that psychedelic therapies show promise in this clinical context. However, we argue the following in this rejoinder: (1) disproportionate attention to psychedelics may overstate the current evidence base, potentially diverting resources away from existing evidence-based programs; (2) a more pressing policy priority related to this public health problem is to address population-level inequities in accessing high-quality, early and holistic palliative care, including psychosocial care; and (3) discussions about expanded access to psychedelics must also foreground equity issues.

Predictive care: a protocol for a computational ethnographic approach to building fair models of inpatient violence in emergency psychiatry.

INTRODUCTION: Managing violence or aggression is an ongoing challenge in emergency psychiatry. Many patients identified as being at risk do not go on to become violent or aggressive. Efforts to automate the assessment of risk involve training machine learning (ML) models on data from electronic health records (EHRs) to predict these behaviours. However, no studies to date have examined which patient groups may be over-represented in false positive predictions, despite evidence of social and clinical biases that may lead to higher perceptions of risk in patients defined by intersecting features (eg, race, gender). Because risk assessment can impact psychiatric care (eg, via coercive measures, such as restraints), it is unclear which patients might be underserved or harmed by the application of ML. METHODS AND ANALYSIS: We pilot a computational ethnography to study how the integration of ML into risk assessment might impact acute psychiatric care, with a focus on how EHR data is compiled and used to predict a risk of violence or aggression. Our objectives include: (1) evaluating an ML model trained on psychiatric EHRs to predict violent or aggressive incidents for intersectional bias; and (2) completing participant observation and qualitative interviews in an emergency psychiatric setting to explore how social, clinical and structural biases are encoded in the training data. Our overall aim is to study the impact of ML applications in acute psychiatry on marginalised and underserved patient groups. ETHICS AND DISSEMINATION: The project was approved by the research ethics board at The Centre for Addiction and Mental Health (053/2021). Study findings will be presented in peer-reviewed journals, conferences and shared with service users and providers.

Cannabis companies and the sponsorship of scientific research: A cross-sectional Canadian case study.

Corporations across sectors engage in the conduct, sponsorship, and dissemination of scientific research. Industry sponsorship of research, however, is associated with research agendas, outcomes, and conclusions that are favourable to the sponsor. The legalization of cannabis in Canada provides a useful case study to understand the nature and extent of the nascent cannabis industry's involvement in the production of scientific evidence as well as broader impacts on equity-oriented research agendas. We conducted a cross-sectional, descriptive, meta-research study to describe the characteristics of research that reports funding from, or author conflicts of interest with, Canadian cannabis companies. From May to August 2021, we sampled licensed, prominent Canadian cannabis companies, identified their subsidiaries, and searched each company name in the PubMed conflict of interest statement search interface. Authors of included articles disclosed research support from, or conflicts of interest with, Canadian cannabis companies. We included 156 articles: 82% included at least one author with a conflict of interest and 1/3 reported study support from a Canadian cannabis company. More than half of the sampled articles were not cannabis focused, however, a cannabis company was listed amongst other biomedical companies in the author disclosure statement. For articles with a cannabis focus, prevalent topics included cannabis as a treatment for a range of conditions (15/72, 21%), particularly chronic pain (6/72, 8%); as a tool in harm reduction related to other substance use (10/72, 14%); product safety (10/72, 14%); and preclinical animal studies (6/72, 8%). Demographics were underreported in empirical studies with human participants, but most included adults (76/84, 90%) and, where reported, predominantly white (32/39, 82%) and male (49/83, 59%) participants. The cannabis company-funded studies included people who used drugs (37%) and people prescribed medical cannabis (22%). Canadian cannabis companies may be analogous to peer industries such as pharmaceuticals, alcohol, tobacco, and food in the following three ways: sponsoring research related to product development, expanding indications of use, and supporting key opinion leaders. Given the recent legalization of cannabis in Canada, there is ample opportunity to create a policy climate that can mitigate the harms of criminalization as well as impacts of the "funding effect" on research integrity, research agendas, and the evidence base available for decision-making, while promoting high-priority and equity-oriented independent research.

Palliative care for people who use drugs during communicable disease epidemics and pandemics: A scoping review on access, policies, and programs and guidelines.

BACKGROUND: People who use drugs with life-limiting illnesses experience substantial barriers to accessing palliative care. Demand for palliative care is expected to increase during communicable disease epidemics and pandemics. Understanding how epidemics and pandemics affect palliative care for people who use drugs is important from a service delivery perspective and for reducing population health inequities. AIM: To explore what is known about communicable disease epidemics and pandemics, palliative care, and people who use drugs. DESIGN: Scoping review. DATA SOURCES: We searched six bibliographic databases from inception to April 2021 as well as the grey literature. We included English and French records about palliative care access, programs, and policies and guidelines for people ⩾18 years old who use drugs during communicable disease epidemics and pandemics. RESULTS: Forty-four articles were included in our analysis. We identified limited knowledge about palliative care for people who use drugs during epidemics and pandemics other than HIV/AIDS. Through our thematic synthesis of the records, we generated the following themes: enablers and barriers to access, organizational barriers, structural inequity, access to opioids and other psychoactive substances, and stigma. CONCLUSIONS: Our findings underscore the need for further research about how best to provide palliative care for people who use drugs during epidemics and pandemics. We suggest four ways that health systems can be better prepared to help alleviate the structural barriers that limit access as well as support the provision of high-quality palliative care during future epidemics and pandemics.

Evidence, ethics and the promise of artificial intelligence in psychiatry.

Researchers are studying how artificial intelligence (AI) can be used to better detect, prognosticate and subgroup diseases. The idea that AI might advance medicine's understanding of biological categories of psychiatric disorders, as well as provide better treatments, is appealing given the historical challenges with prediction, diagnosis and treatment in psychiatry. Given the power of AI to analyse vast amounts of information, some clinicians may feel obligated to align their clinical judgements with the outputs of the AI system. However, a potential epistemic privileging of AI in clinical judgements may lead to unintended consequences that could negatively affect patient treatment, well-being and rights. The implications are also relevant to precision medicine, digital twin technologies and predictive analytics generally. We propose that a commitment to epistemic humility can help promote judicious clinical decision-making at the interface of big data and AI in psychiatry.

Clinical ethics consultations: a scoping review of reported outcomes.

BACKGROUND: Clinical ethics consultations (CEC) can be complex interventions, involving multiple methods, stakeholders, and competing ethical values. Despite longstanding calls for rigorous evaluation in the field, progress has been limited. The Medical Research Council (MRC) proposed guidelines for evaluating the effectiveness of complex interventions. The evaluation of CEC may benefit from application of the MRC framework to advance the transparency and methodological rigor of this field. A first step is to understand the outcomes measured in evaluations of CEC in healthcare settings. OBJECTIVE: The primary objective of this review was to identify and map the outcomes reported in primary studies of CEC. The secondary objective was to provide a comprehensive overview of CEC structures, processes, and roles to enhance understanding and to inform standardization. METHODS: We searched electronic databases to identify primary studies of CEC involving patients, substitute decision-makers and/or family members, clinicians, healthcare staff and leaders. Outcomes were mapped across five conceptual domains as identified a priori based on our clinical ethics experience and preliminary literature searches and revised based on our emerging interpretation of the data. These domains included personal factors, process factors, clinical factors, quality, and resource factors. RESULTS: Forty-eight studies were included in the review. Studies were highly heterogeneous and varied considerably regarding format and process of ethical intervention, credentials of interventionist, population of study, outcomes reported, and measures employed. In addition, few studies used validated measurement tools. The top three outcome domains that studies reported on were quality (n = 31), process factors (n = 23), and clinical factors (n = 19). The majority of studies examined multiple outcome domains. All five outcome domains were multidimensional and included a variety of subthemes. CONCLUSIONS: This scoping review represents the initial phase of mapping the outcomes reported in primary studies of CEC and identifying gaps in the evidence. The confirmed lack of standardization represents a hindrance to the provision of high quality intervention and CEC scientific progress. Insights gained can inform the development of a core outcome set to standardize outcome measures in CEC evaluation research and enable scientifically rigorous efficacy trials of CEC.

Palliative psychiatry in a narrow and in a broad sense: A concept clarification.

Even with optimal treatment, some persons with severe and persistent mental illness do not achieve a level of mental health, psychosocial functioning and quality of life that is acceptable to them. With each unsuccessful treatment attempt, the probability of achieving symptom reduction declines while the probability of somatic and psychological side effects increases. This worsening benefit-harm ratio of treatment aiming at symptom reduction has motivated calls for implementing palliative approaches to care into psychiatry (palliative psychiatry). Palliative psychiatry accepts that some cases of severe and persistent mental illness can be irremediable and calls for a careful evaluation of goals of care in these cases. It aims at reducing harm, relieving suffering and thus improving quality of life directly, working around irremediable psychiatric symptoms. In a narrow sense, this refers to patients likely to die of their severe and persistent mental illness soon, but palliative psychiatry in a broad sense is not limited to end-of-life care. It can - and often should - be integrated with curative and rehabilitative approaches, as is the gold standard in somatic medicine. Palliative psychiatry constitutes a valuable addition to established non-curative approaches such as rehabilitative psychiatry (which focuses on psychosocial functioning instead of quality of life) and personal recovery (a journey that persons living with severe and persistent mental illness may undertake, not necessarily accompanied by mental health care professionals). Although the implementation of palliative psychiatry is met with several challenges such as difficulties regarding decision-making capacity and prognostication in severe and persistent mental illness, it is a promising new approach in caring for persons with severe and persistent mental illness, regardless of whether they are at the end of life.

How the Suboxone Education Programme presented as a solution to risks in the Canadian opioid crisis: a critical discourse analysis.

OBJECTIVES: Pharmaceutical industry involvement in medical education, research and clinical practice can lead to conflicts of interest. Within this context, this study examined how the 'Suboxone Education Programme', developed and delivered by a pharmaceutical company as part of a federally regulated risk management program, was presented as a solution to various kinds of risks relating to opioid use in public documents from medical institutions across Canada. SETTING: These documents were issued during the Canadian opioid crisis, a time when the involvement of industry in health policy was being widely questioned given industry's role in driving the overprescribing of opioid analgesics and contributing to population-level harms. DESIGN: A critical discourse analysis of 69 documents collected between July 2020 and May 2021 referencing the Suboxone Education Program spanning 13 years (2007-2021) from medical, nursing and pharmacy institutions sourced from every Canadian province and territory. Discursive themes were identified through iterative and duplicate analyses using a semistructured data extraction instrument. RESULTS: Documents characterised the Programme as addressing iatrogenic risks from overprescribing opioid analgesics, environmental risks from a toxic street drug supply and pharmacological risks relating to the dominant therapeutic alternative of methadone. The programme was identified as being able to address these risks by providing mechanisms to surveil healthcare professionals and to facilitate the prescribing of Suboxone. Medical institutions legitimised the Suboxone Education Programme by lending their regulatory, epidemiological and professional authority. CONCLUSIONS: Addressing risk is considered as a central, moral responsibility of contemporary healthcare services. In this case, moral imperatives to address opioid crisis-related risks overrode other ethical concerns regarding conflicts of interest between industry and public welfare. Failing to address these conflicts potentially imperils efforts of mitigating population health harms by propagating an important driving force of the opioid crisis.

Brain Computer Interfaces and Communication Disabilities: Ethical, Legal, and Social Aspects of Decoding Speech From the Brain.

A brain-computer interface technology that can decode the neural signals associated with attempted but unarticulated speech could offer a future efficient means of communication for people with severe motor impairments. Recent demonstrations have validated this approach. Here we assume that it will be possible in future to decode imagined (i.e., attempted but unarticulated) speech in people with severe motor impairments, and we consider the characteristics that could maximize the social utility of a BCI for communication. As a social interaction, communication involves the needs and goals of both speaker and listener, particularly in contexts that have significant potential consequences. We explore three high-consequence legal situations in which neurally-decoded speech could have implications: Testimony, where decoded speech is used as evidence; Consent and Capacity, where it may be used as a means of agency and participation such as consent to medical treatment; and Harm, where such communications may be networked or may cause harm to others. We then illustrate how design choices might impact the social and legal acceptability of these technologies.