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.

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.

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.

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.

Chronic Pain and Opioid Prescribing: Three Ways for Navigating Complexity at the Clinical‒Population Health Interface.

Clinically focused interventions for people living with pain, such as health professional education, clinical decision support systems, prescription drug monitoring programs, and multidisciplinary care to support opioid tapering, have all been promoted as important solutions to the North American opioid crisis. Yet none have so far delivered substantive beneficial opioid-related population health outcomes. In fact, while total opioid prescribing has leveled off or reduced in many jurisdictions, population-level harms from opioids have continued to increase dramatically. We attribute this failure partly to a poor recognition of the epistemic and ethical complexities at the interface of clinical and population health. We draw on a framework of knowledge networks in wicked problems to identify 3 strategies to help navigate these complexities: (1) designing and evaluating clinically focused interventions as complex interventions, (2) reformulating evidence to make population health dynamics apparent, and (3) appealing to the inseparability of facts and values to support decision-making in uncertainty. We advocate that applying these strategies will better equip clinically focused interventions as complements to structural and public health interventions to achieve the desired beneficial population health effects. (Am J Public Health. 2022;112(S1):S56-S65. https://doi.org/10.2105/AJPH.2021.306500).

Conceptualising fairness: three pillars for medical algorithms and health equity.

OBJECTIVES: Fairness is a core concept meant to grapple with different forms of discrimination and bias that emerge with advances in Artificial Intelligence (eg, machine learning, ML). Yet, claims to fairness in ML discourses are often vague and contradictory. The response to these issues within the scientific community has been technocratic. Studies either measure (mathematically) competing definitions of fairness, and/or recommend a range of governance tools (eg, fairness checklists or guiding principles). To advance efforts to operationalise fairness in medicine, we synthesised a broad range of literature. METHODS: We conducted an environmental scan of English language literature on fairness from 1960-July 31, 2021. Electronic databases Medline, PubMed and Google Scholar were searched, supplemented by additional hand searches. Data from 213 selected publications were analysed using rapid framework analysis. Search and analysis were completed in two rounds: to explore previously identified issues (a priori), as well as those emerging from the analysis (de novo). RESULTS: Our synthesis identified 'Three Pillars for Fairness': transparency, impartiality and inclusion. We draw on these insights to propose a multidimensional conceptual framework to guide empirical research on the operationalisation of fairness in healthcare. DISCUSSION: We apply the conceptual framework generated by our synthesis to risk assessment in psychiatry as a case study. We argue that any claim to fairness must reflect critical assessment and ongoing social and political deliberation around these three pillars with a range of stakeholders, including patients. CONCLUSION: We conclude by outlining areas for further research that would bolster ongoing commitments to fairness and health equity in healthcare.

Medical assistance in dying legislation: Hospice palliative care providers' perspectives.

BACKGROUND: After over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society. OBJECTIVE: To describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying. DESIGN: In this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers. PARTICIPANTS AND SETTING: Multi-disciplinary hospice palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying. ETHICAL CONSIDERATIONS: The research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms. RESULTS: The 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients' last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics. CONCLUSION: While being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider's perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients' end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying.

Canadian Society of Transplantation White Paper: Ethical and Legal Considerations for Alcohol and Cannabis Use in Solid Organ Listing and Allocation.

Alcohol and cannabis use as a contraindication to organ transplantation is a controversial issue. Until recently, patients in Canada with alcohol-associated liver disease were required to demonstrate abstinence for 6 mo to receive a liver transplant. There is no equivalent rule that is applied consistently for cannabis use. There is some evidence that alcohol and cannabis use disorder pretransplant could be associated with worse outcomes posttransplantation. However, early liver transplantation for patients with alcohol-associated liver disease in France and in the United States has led to challenges of the 6-mo abstinence rule in Canada in the media. It has also resulted in several legal challenges arguing that the rule violates human rights laws regarding discrimination in the provision of medical services and that the rule is also unconstitutional (this challenge is still before the court). Recent legalization of cannabis use for adults in Canada has led to questions about the appropriateness of limiting transplant access based on cannabis use. The ethics committee of the Canadian Society of Transplantation was asked to provide an ethical analysis of cannabis and alcohol abstinence policies. Our conclusions were as follows: neither cannabis use nor the 6-mo abstinence rule for alcohol use should be an absolute contraindication to transplantation, and transplant could be offered to selected patients, further research should be conducted to ensure evidence-based policies; and the transplant community has a duty not to perpetuate stigma associated with alcohol and cannabis use disorders.

First Ready, First to Go: Ethical Priority-Setting of Allogeneic Stem Cell Transplant at a Major Cancer Centre.

Medical advancements have now made it possible to provide allogeneic stem cell transplantation (allo-SCTs) to older patients and use stem cells from less well-matched donors. This has resulted in access to a life-saving modality for a greater number of patients with imminent life-threatening illnesses. However, resources have not always kept pace with innovation and expanded volumes. During the summer of 2015 in the province of Ontario, Canada, inadequate resources contributed to a capacity crisis, resulting in extended wait-lists for allo-SCT across the province. This situation presented unique ethical challenges, including the need for ongoing negotiations with health system partners and nimble process management to ensure timely delivery of care. This article reports on the process one organization used to determine how to equitably allocate scarce allo-SCT resources. With the ever-expanding landscape of new and emerging medical technologies, our experience has implications for the ethics of translating other increasingly expensive health technologies to clinical care.

Improving opioid guideline adherence: evaluation of a multifaceted, theory-informed pilot intervention for family physicians.

OBJECTIVES: Opioid-related deaths continue to increase in North America, an epidemic that was initiated by high rates of opioid prescribing. We designed a multifaceted, theory-informed Opioid Self-Assessment (OSA) package, to increase adherence to the Canadian Opioid Guideline among family physicians. This study aimed to assess changes in Canadian family physicians' knowledge and practices after completing the OSA package. DESIGN: We conducted a mixed-method evaluation using a pre-test and post-test design that involved the collection of both qualitative and quantitative data. SETTING: This research was conducted in the primary care setting in Ontario, Canada. PARTICIPANTS: We recruited a purposive sample of nine family physicians in Ontario who use long-term opioid therapy to treat patients with chronic pain. INTERVENTIONS: The OSA package included four components: an online knowledge test, an online learning programme, a safe medication practice self-assessment questionnaire and chart audit with feedback. OUTCOME MEASURES: Our measures included changes in knowledge, opioid safety practices and physicians' perspectives on the OSA package. RESULTS: We found statistically significant improvements between pre-test and post-test knowledge scores at both baseline and 6-month follow-up. Physicians' scores improved significantly on five of the seven core characteristics of the practice self-assessment questionnaire. On the chart audits, we observed an improvement in patient education between baseline and 6 months. Qualitative interviews showed that participants appreciated embedded resources in the OSA package. The completion of the package stimulated identification of gaps or deficits in practice and served as a useful reminder to discuss risk and safety with patients. Participants described the chart review as helpful in prompting discussions with their patients, identifying deficits and strengths and a 'primary motivator' for project participation. CONCLUSIONS: The OSA package has the potential to improve medication safety practices in primary care related to opioid monitoring and adherence to current opioid guidelines.

Ambiguous identities of drugs and people: A scoping review of opioid-related stigma.

BACKGROUND: Human beings have long consumed opiates and opioids for pleasure and as a treatment for numerous ailments, most notably pain. North America is currently in the grips of a crisis of opioid-related overdoses, and stigma is considered a major driver of the harms. While it is well established that substance use in general is highly stigmatized, stigma is a complex concept and opioid-related stigma is not well understood. A lack of clarity on opioid-related stigma has practice and policy implications in terms of understanding the sources of opioid stigma, how it manifests in various contexts, its impact on affected groups, and the development of effective strategies to redress it. METHODS: We performed a scoping review of the academic literature to develop a typology of opioid-related stigma. A charting process identified the type, agent, and recipient of stigma as well as the methodology and substances considered. RESULTS: Our search yielded 8,543 articles, from which 49 were included in the analysis. Based on the findings, we developed a typology of four main themes: (1) interpersonal and structural stigma toward people accessing opioid agonist therapy (OAT); (2) stigma related to opioids for the treatment of chronic pain; (3) stigma in healthcare settings; and (4) self-stigma. CONCLUSION: How opioid-stigma is (re)produced depends on the context of opioid use, the social identity and networks of the person who is consuming the opioid, and what type of opioid is being consumed, including medically-sanctioned forms of treatment. Opioid-related stigma permeates intrapersonal, interpersonal, structural, and societal levels, and people who consume opioids are marginalized at all levels. Our review describes our typology of stigma and illuminates multi-level considerations for reducing opioid-related stigma in healthcare settings.

Defining and measuring health equity in research on task shifting in high-income countries: A systematic review.

INTRODUCTION: Task shifting interventions have been implemented to improve health and address health inequities. Little is known about how inequity and vulnerability are defined and measured in research on task shifting. We conducted a systematic review to identify how inequity and vulnerability are identified, defined and measured in task shifting research from high-income countries. METHODS AND ANALYSIS: We implemented a novel search process to identify programs of research concerning task shifting interventions in high-income countries. We searched MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, and CENTRAL to identify articles published from 2004 to 2016. Each program of research incorporated a "parent" randomized trial and "child" publications or sub-studies arising from the same research group. Two investigators extracted (1) study details, (2) definitions and measures of health equity or population vulnerability, and (3) assessed the quality of the reporting and measurement of health equity and vulnerability using a five-point scale developed for this study. We summarized the findings using a narrative approach. RESULTS: Fifteen programs of research met inclusion criteria, involving 15 parent randomized trials and 62 child publications. Included programs of research were all undertaken in the United States, among Hispanic- (5/15), African- (2/15), and Korean-Americans (1/15), and low socioeconomic status (2/15), rural (2/15) and older adult populations (2/15). Task shifting interventions included community health workers, peers, and a variety of other non-professional and lay workers to address a range of non-communicable diseases. Some research provided robust analyses of the affected populations' health inequities and demonstrated how a task shifting intervention redressed those concerns. Other studies provided no such definitions and measured only biomedical endpoints. CONCLUSION: Included studies vary substantially in the definition and measurement of health inequity and vulnerability. A more precise theoretical and evaluative framework for task shifting is recommended to effectively achieve the goal of equitable health.

Defining and measuring health equity effects in research on task shifting interventions in high-income countries: a systematic review protocol.

INTRODUCTION: Task shifting interventions are intended to both deliver clinically effective treatments to reduce disease burden and address health inequities or population vulnerability. Little is known about how health equity and population vulnerability are defined and measured in research focused on task shifting. This systematic review will address the following questions: Among task shifting interventions in high-income settings that have been studied using randomised controlled trials or variants, how are health inequity or population vulnerability identified and defined? What methods and indicators are used to describe, characterise and measure the population's baseline status and the intervention's impacts on inequity and vulnerability? METHODS AND ANALYSIS: Studies were identified through database searches (MEDLINE, Embase, CINAHL, PsycINFO and Web of Science). Eligible studies will be randomised controlled trials published since 2004, conducted in high-income countries, concerning task shifting interventions to treat any disease, in any population that may face health disadvantage as defined by the PROGRESS-Plus framework (place of residence, race/ethnicity/culture/language, occupation, gender/sex, religion, social capital, socioeconomic position, age, disability, sexual orientation, other vulnerable groups). We will conduct independent and duplicate title and abstract screening, then identify related papers from the same programme of research through further database and manual searching. From each programme of research, we will extract study details, and definitions and measures of health equity or population vulnerability based on the PROGRESS-Plus framework. Two investigators will assess the quality of reporting and measurement related to health equity and vulnerability using a scale developed for this study. A narrative synthesis will highlight similarities and differences between the gathered studies and offer critical analyses and implications. ETHICS AND DISSEMINATION: This review does not involve primary data collection, does not constitute research on human subjects and is not subject to additional institutional ethics review or informed consent procedures. Dissemination will include open-access peer-reviewed publication and academic conference presentations.PROSPERO Registration Number CRD42017049959.

What's trust got to do with it? Revisiting opioid contracts.

Prescription opioid abuse (POA) is an escalating clinical and public health problem. Physician worries about iatrogenic addiction and whether patients are 'drug seeking', 'abusing' and 'diverting' prescription opioids exist against a backdrop of professional and legal consequences of prescribing that have created a climate of distrust in chronic pain management. One attempt to circumvent these worries is the use of opioid contracts that outline conditions patients must agree to in order to receive opioids. Opioid contracts have received some scholarly attention, with trust and trustworthiness identified as key values and virtues. However, few articles have provided a critical account of trust and trustworthiness in this context, particularly when there exists disagreement about their role in terms of enhancing or detracting from the patient-physician relationship. This paper argues that opioid contracts represent a misleading appeal to patient-physician trust. Assuming the patient is untrustworthy may wrongfully undermine the credibility of the patient's testimony, which may exacerbate certain vulnerabilities of the person in pain. However, misplaced trust in certain patients may render the physician vulnerable to the potential harms of POA. If patients distrust their physician, or feel distrusted by them, this may destabilise the therapeutic relationship and compromise care. A process of epistemic humility may help cultivate mutual patient-physician trust. Epistemic humility is a collaborative effort between physicians and patients that recognises the role of patients' subjective knowledge in enhancing physicians' self-understanding of their theoretical and practice frameworks, values and assumptions about the motivations of certain patients who report chronic pain.

Negotiating the Relationship Between Addiction, Ethics, and Brain Science.

Advances in neuroscience are changing how mental health issues such as addiction are understood and addressed as a brain disease. Although a brain disease model legitimizes addiction as a medical condition, it promotes neuro-essentialist thinking, categorical ideas of responsibility and free choice, and undermines the complexity involved in its emergence. We propose a 'biopsychosocial systems' model where psycho-social factors complement and interact with neurogenetics. A systems approach addresses the complexity of addiction and approaches free choice and moral responsibility within the biological, lived experience and socio-historical context of the individual. We examine heroin-assisted treatment as an applied case example within our framework. We conclude with a discussion of the model and its implications for drug policy, research, addiction health care systems and delivery, and treatment of substance use problems.