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The rights and interests of First Nations, Metis, and Inuit in debates over deemed consent legislation for deceased organ donation in Canada: calls to action.

ABSTRACT: Nova Scotia, Canada is the first jurisdiction in North America to pass deemed consent legislation for organ donation. Individuals medically suitable to be deceased organ donors are considered to have authorised post-mortem organ removal for transplantation unless they opt out of the system. While governments do not have a legal duty to consult Indigenous nations before passing health legislation, this does not diminish Indigenous interests and rights in relation to the legislation. This analysis discusses impacts of the legislation, specifically intersectionality with Indigenous rights, trust in the healthcare system, transplant inequities, and distinctions-based health legislation. How governments engage Indigenous groups about the legislation is yet to unfold. Consultation with Indigenous leaders and engagement and education of Indigenous peoples is, however, key to moving forward legislation that respects Indigenous rights and interests. What happens in Canada is being watched globally, as deemed consent is debated as a solution to organ transplant shortages.

SUBMITTER: Tait CL

PROVIDER: S-EPMC9950653 | biostudies-literature | 2023 Feb

REPOSITORIES: biostudies-literature

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The rights and interests of First Nations, Métis, and Inuit in debates over deemed consent legislation for deceased organ donation in Canada: calls to action.

Tait Caroline L CL

Lancet regional health. Americas 20230102

Nova Scotia, Canada is the first jurisdiction in North America to pass deemed consent legislation for organ donation. Individuals medically suitable to be deceased organ donors are considered to have authorised post-mortem organ removal for transplantation unless they opt out of the system. While governments do not have a legal duty to consult Indigenous nations before passing health legislation, this does not diminish Indigenous interests and rights in relation to the legislation. This analysis ...[more]

PMID: 36844019

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Project description:BackgroundTo gain culturally appropriate awareness of First Nations, Inuit and/or Métis Health, research suggests that programs focus on sending more trainees to First Nations, Inuit and/or Métis communities Working within this context provides experiences and knowledge that build upon classroom education and support trainees' acquisition of skills to engage in culturally safe healthcare provision. This study examines residents' and faculty members' perceptions of how residency training programs can optimize First Nations, Inuit and/or Métis health training and support residents in gaining the knowledge, skills, and experiences for working in and with First Nations, Inuit and/or Métis communities.MethodsA qualitative approach was used, guided by a relational lens for collecting data and a constructivist grounded theory for data interpretation. Theoretical sampling was used to recruit 35 participants from three main study sites across two western Canadian provinces. Recruitment, data collection, and analysis using constructivist grounded theory occurred concurrently to ensure appropriate depth of exploration.ResultsOur data analysis revealed five themes: Five themes were generated: Complexity of voluntourism as a concept; Diversity of knowledge representation required for developing curriculum; Effective models of care for First Nations, Inuit and/or Métis health; Essential traits that residents should have for working in First Nations, Inuit and/or Métis communities; and Building relationships and trust by engaging the community.ConclusionsFirst Nations, Inuit and/or Métis Health should be prioritized within Canadian postgraduate medical education. Equipping trainees to provide holistic care, immersing in and learning from First Nations, Inuit and/or Métis communities is essential for developing the next generation of clinicians and preceptors. We present educational recommendations for residency programs to optimize First Nations, Inuit and/or Métis health educational experiences and provide residents with skills to provide effective and culturally safe care.

Project description:IntroductionDecades of research demonstrate that First Nations, Metis and Inuit (FN/M/I) populations have differential access to diagnostic and therapeutic healthcare. Emerging evidence shows that this continues to be the case during the SARS-CoV-2 pandemic. In an effort to rectify these differences in access to care, our team, which is co-led by FN/M/I partners, will generate and distribute evidence on COVID-19 diagnostic testing and vaccination in high-priority FN/M/I populations in Manitoba, with the goal of identifying system-level and individual-level factors that act as barriers to equitable care and thereby informing Indigenous-led public health responses.Methods and analysisOur nations-based approach focuses on FN/M/I populations with separate study arms for each group. Linked administrative health data on COVID-19 diagnostic testing and vaccinations are available on a weekly basis. We will conduct surveillance to monitor trends in testing and vaccination among each FN/M/I population and all other Manitobans, map the geographic distribution of these outcomes by health region and tribal council, and identify barriers to testing and vaccination to inform public health strategies. We will follow the course of the pandemic starting from January 2020 and report findings quarterly.Ethics and disseminationEthics approvals have been granted by the University of Manitoba Research Ethics Board and from each of our FN/M/I partners' organisations. Our team is committed to engaging in authentic relationship-based research that follows First Nations, Metis and Inuit research ethics principles. Our FN/M/I partners will direct the dissemination of new information to leadership in their communities (health directors, community health organisations) and to decision-makers in the provincial Ministry of Health. We will also publish in open-access journals. The study will create ongoing capacity to monitor Manitoba's pandemic response and ensure potential health inequities are minimised, with learnings applicable to other jurisdictions where detailed administrative data may not be available.

Project description:BackgroundFirst Nations, Inuit and Métis Peoples across geographies are at higher risk of SARS-CoV-2 infection and COVID-19 because of high rates of chronic disease, inadequate housing and barriers to accessing health services. Most Indigenous Peoples in Canada live in cities, where SARS-CoV-2 infection is concentrated. To address gaps in SARS-CoV-2 information for these urban populations, we partnered with Indigenous agencies and sought to generate rates of SARS-CoV-2 testing and vaccination, and incidence of infection for First Nations, Inuit and Métis living in 2 Ontario cities.MethodsWe drew on existing cohorts of First Nations, Inuit and Métis adults in Toronto (n = 723) and London (n = 364), Ontario, who were recruited using respondent-driven sampling. We linked to ICES SARS-CoV-2 databases and prospectively monitored rates of SARS-CoV-2 testing, diagnosis and vaccination for First Nations, Inuit and Métis, and comparator city and Ontario populations.ResultsWe found that SARS-CoV-2 testing rates among First Nations, Inuit and Métis were higher in Toronto (54.7%, 95% confidence interval [CI] 48.1% to 61.3%) and similar in London (44.5%, 95% CI 36.0% to 53.1%) compared with local and provincial rates. We determined that cumulative incidence of SARS-CoV-2 infection was not significantly different among First Nations, Inuit and Métis in Toronto (7364/100 000, 95% CI 2882 to 11 847) or London (7707/100 000, 95% CI 2215 to 13 200) compared with city rates. We found that rates of vaccination among First Nations, Inuit and Métis in Toronto (58.2%, 95% CI 51.4% to 64.9%) and London (61.5%, 95% CI 52.9% to 70.0%) were lower than the rates for the 2 cities and Ontario.InterpretationAlthough Ontario government policies prioritized Indigenous populations for SARS-CoV-2 vaccination, vaccine uptake was lower than in the general population for First Nations, Inuit and Métis Peoples in Toronto and London. Ongoing access to culturally safe testing and vaccinations is urgently required to avoid disproportionate hospital admisson and mortality related to COVID-19 in these communities.

Project description:BackgroundThe Canadian province of Nova Scotia recently became the first jurisdiction in North America to implement deemed consent organ donation legislation. Changing the consent models constituted one aspect of a larger provincial program to increase organ and tissue donation and transplantation rates. Deemed consent legislation can be controversial among the public, and public participation is integral to the successful implementation of the program.ObjectiveSocial media constitutes key spaces where people express opinions and discuss topics, and social media discourse can influence public perceptions. This project aimed to examine how the public in Nova Scotia responded to legislative changes in Facebook groups.MethodsUsing Facebook's search engine, we searched for posts in public Facebook groups using the terms "deemed consent," "presumed consent," "opt out," or "organ donation" and "Nova Scotia," appearing from January 1, 2020, to May 1, 2021. The finalized data set included 2337 comments on 26 relevant posts in 12 different public Nova Scotia-based Facebook groups. We conducted thematic and content analyses of the comments to determine how the public responded to the legislative changes and how the participants interacted with one another in the discussions.ResultsOur thematic analysis revealed principal themes that supported and critiqued the legislation, raised specific issues, and reflected on the topic from a neutral perspective. Subthemes showed individuals presenting perspectives through a variety of themes, including compassion, anger, frustration, mistrust, and a range of argumentative tactics. The comments included personal narratives, beliefs about the government, altruism, autonomy, misinformation, and reflections on religion and death. Content analysis revealed that Facebook users reacted to popular comments with "likes" more than other reactions. Comments with the most reactions included both negative and positive perspectives about the legislation. Personal donation and transplantation success stories, as well as attempts to correct misinformation, were some of the most "liked" positive comments.ConclusionsThe findings provide key insights into perspectives of individuals from Nova Scotia on deemed consent legislation, as well as organ donation and transplantation broadly. The insights derived from this analysis can contribute to public understanding, policy creation, and public outreach efforts that might occur in other jurisdictions considering the enactment of similar legislation.

Project description:BackgroundThere is little data modeling the impact of deemed consent legislation (eligible individuals who do not register their decision to decline to be a donor are presumed to consent after death) on outcomes for individuals with kidney failure.ObjectiveTo estimate the change in life-years (LYs) and quality-adjusted life-years (QALYs) resulting from different changes in the rate of deceased donor kidney transplantation associated with deemed consent legislation and health system transformation.DesignDynamic Decision Analytic Model.SettingThis modeling study included kidney failure patients in Atlantic Canada (all of whom receive their kidney transplants in Halifax, Nova Scotia). The adoption of deemed consent legislation was the intervention, and opt-in (the status quo) was the reference comparator.PatientsPrevalent kidney failure patients at the end of 2019 in all of Atlantic Canada (N = 3615) served as the starting population.MethodsWe compared expected outcomes between the intervention and comparator. Changes in QALYs and total LYs were modeled under different changes to the proportion of patients receiving a deceased donor kidney transplant (from -10% to 20%) resulting from deemed consent relative to the status quo. Changes in QALYs and LYs were reported for 3 different time horizons (5, 10, and 30 years). Uncertainty around QALYs and total LYs was reported using 95% confidence intervals (CIs) constructed from a probabilistic sensitivity analysis using 1000 Monte Carlo Simulations.ResultsThe increase in QALYs ranged from 7 QALYs (95% CI: 5-10) with a 5% increase using a 5-year time frame to 882 QALYs (95% CI: 619-1144) with a 20% increase over a 30-year time frame. Parallel changes in total LYs were also observed. In contrast, decreases in deceased donor kidney transplantation resulted in a loss of QALYs (for example, -463 QALYs; 95% CI: -633 to -306 for a 10% decrease over a 30-year time frame). Using the most optimistic scenario (a 20% increase), there was an 18% increase in the cumulative number of deceased donor kidney transplant recipients over a 30-year observation period.LimitationsThe results are subject to uncertainty depending on changes to the dialysis or transplant population that were not modeled and that may not be fully captured with probabilistic sensitivity analysis.ConclusionsDeemed consent legislation will lead to variable changes in QALYs and total LYs for the kidney failure population, depending on the degree to which deceased donor transplantation rates change and the time horizon of observation. This modeling study may serve as a baseline to monitor the future impact of deemed consent legislation.

Dataset Information

The rights and interests of First Nations, Metis, and Inuit in debates over deemed consent legislation for deceased organ donation in Canada: calls to action.

Publications

The rights and interests of First Nations, Métis, and Inuit in debates over deemed consent legislation for deceased organ donation in Canada: calls to action.

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