Development of a consortium to examine organ donation legislative and system reforms: A report from the LEADDR consortium.

In April 2019, the province of Nova Scotia became the first jurisdiction in North America to pass legislation that incorporated deemed consent for deceased organ donation. The reform included many other important updates, including the hierarchy for consent, enabled donor and recipient contact, and mandatory referral of potential deceased donors. Additionally, system reforms were implemented to improve the deceased donation system in Nova Scotia. A collection of national colleagues identified the magnitude of the opportunity to develop a comprehensive strategy to measure and evaluate the impact of the legislative and system reforms. This article describes the successful development of a consortium from both national and provincial jurisdictions that included experts from a variety of backgrounds and clinical and administrative disciplines. In describing the creation of this group, we hope to offer our case example as a model for the evaluation of other health system reforms from a multidisciplinary perspective.

Deceased organ donation in Nova Scotia: Presumed consent and system transformation.

In recent years, rates of deceased organ donation in Nova Scotia have remained stagnant, falling behind provinces that have invested in their organ donation programs. The Nova Scotia provincial government has recently committed to health system transformation, which will include enactment of presumed consent legislation in 2020. Although impressive rates of deceased organ donation are often observed in countries with presumed consent legislation, improvements in performance can more often be attributed to the accompanying health system transformation. Key components of high performing deceased organ donation systems include highly trained organ donation specialists, practice guidelines, healthcare professional education, performance metric reviews, accountability frameworks, and public awareness campaigns in addition to adequate legislation. For Nova Scotia's organ donation program to succeed, the provincial government must also invest the frontline financial resources required to develop and maintain adequate program infrastructure and implement key strategies to support a culture of donation.

Delayed Referral Results in Missed Opportunities for Organ Donation After Circulatory Death.

OBJECTIVES: Rates of organ donation and transplantation have steadily increased in the United States and Canada over the past decade, largely attributable to a notable increase in donation after circulatory death. However, the number of patients awaiting solid organ transplantation continues to remain much higher than the number of organs transplanted each year. The objective of this study was to determine the potential to increase donation rates further by identifying gaps in the well-established donation after circulatory death process in Ontario. DESIGN: Retrospective cohort study. SETTING: Provincial organ procurement organization. PATIENTS: Patients who died in designated donation hospitals within the province of Ontario, Canada between April 1, 2013, and March 31, 2015. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 1,407 patient deaths following planned withdrawal of life-sustaining therapy, 54.0% (n = 760) were medically suitable for donation after circulatory death. In 438 cases where next of kin was approached, consent rates reached 47.5%. A total of 119 patients became actual organ donors. Only 66.2% (n = 503) of suitable patients were appropriately referred, resulting in 251 missed potential donors whose next of kin could not be approached regarding organ donation because referral occurred after initiation of withdrawal of life-sustaining therapy or not at all. CONCLUSIONS: The number of medically suitable patients who die within 2 hours of planned withdrawal of life-sustaining therapy is nearly six times higher than the number of actual organ donors, with the greatest loss of potential due to delayed referral until at the time of or after planned withdrawal of life-sustaining therapy. Intensive care teams are not meeting their ethical responsibility to recognize impending death and appropriately refer potential organ donors to the local organ procurement organization. In cases where patients had previously registered their consent decision, they were denied a healthcare right.

Development of the Nova Scotia Potential Donor Audit (PDA) Tool and 2020 Historic Performance Database: Lessons Learned From the First 1000 Medical Record Reviews.

Background: Legislation and accountability frameworks are key components of high-performing deceased-donation systems. In 2021, Nova Scotia (NS), Canada, became the first jurisdiction in North America to enact deemed consent legislation and concurrently implemented mandatory referral legislation similar to that found in other Canadian provinces. Frontline financial resources were provided by the government to support the development of program infrastructure, including implementation of means to evaluate system performance. Methods: The Organ Donation Program (ODP), in collaboration with other stakeholders, developed a Potential Donor Audit (PDA) tool and database for referral intake and manual performance audits. Medical record reviews of deaths in the year before legislative change were conducted to pilot and revise the PDA and evaluate missed donation opportunities. Results: The NS PDA was piloted on 1028 patient deaths. Of 518 patients (50.4%) who met clinical triggers for referral to the ODP, 72 (13.9%) were referred (86.1% missed referral rate). One hundred sixty-three patients met the NS definition of a potential donor; 53 (32.5%) were referred (110 missed potential donors). Referral consent rates reached 71.7% (n = 38 of 53 approaches). The actualized donation rate reported by Canadian Blood Services was 29.9 donors per million population (n = 34 donors). Discussion: We documented high rates of missed referrals and missed potential donors before the enactment of mandatory referral and deemed consent legislation. Conclusions: The ODP has intentionally broadened clinical criteria for referral to shift the responsibility of identifying medically suitable potential donors from bedside clinicians to organ donation specialists. Lessons learned from our experience developing a PDA include the importance of early involvement of multiple stakeholders and ongoing modification of fields and workflow based on data availability and utility for clinical, educational, research, and reporting purposes.

Web-Based Perspectives of Deemed Consent Organ Donation Legislation in Nova Scotia: Thematic Analysis of Commentary in Facebook Groups.

Background: The 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. Objective: Social 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. Methods: Using 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. Results: Our 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. Conclusions: The 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.

A Program of Research to Evaluate the Impact of Deceased Organ Donation Legislative Reform in Nova Scotia: The LEADDR Program.

BACKGROUND: This is the first time deemed consent, where the entire population of a jurisdiction is considered to have consented for donation unless they have registered otherwise, will be implemented in North America. While relatively common in other regions of the world-notably Western Europe-it is uncertain how this practice will influence deceased donation practices and attitudes in Canada. METHODS: We describe a Health Canada funded program of research that will evaluate the implementation process and full impact of the deceased organ donation legislation and the health system transformation in Nova Scotia that includes opt-out consent. RESULTS: There is a need to evaluate the impact of these changes to inform not only Nova Scotia and Atlantic Canada, but also other provincial, national, and international stakeholders. CONCLUSIONS: We establish a rigorous academic framework that we will use to evaluate this significant health system transformation.

Deceased Organ Donation Registration and Familial Consent among Chinese and South Asians in Ontario, Canada.

OBJECTIVE: For various reasons, people of Chinese (China, Hong Kong or Taiwan) and South Asian (Indian subcontinent) ancestry (the two largest ethnic minority groups in Ontario, Canada) may be less likely to register for deceased organ donation than the general public, and their families may be less likely to consent for deceased organ donation at the time of death. METHODS: We conducted two population-based studies: (1) a cross-sectional study of deceased organ donor registration as of May 2013, and (2) a cohort study of the steps in proceeding with deceased organ donation for patients who died in hospital from October 2008 to December 2012. RESULTS: A total of 49 938 of 559 714 Chinese individuals (8.9%) and 47 774 of 374 291 South Asians (12.8%) were registered for deceased organ donation, proportions lower than the general public (2 676 260 of 10 548 249 (25.4%). Among the 168 703 Ontarians who died in a hospital, the families of 33 of 81 Chinese (40.1%; 95% CI: 30.7%-51.6%) and 39 of 72 South Asian individuals (54.2%; 95% CI: 42.7-65.2%) consented for deceased organ donation, proportions lower than the general public (68.3%; 95% CI: 66.4%-70.0%). CONCLUSIONS: In Ontario, Canada Chinese and South Asian individuals are less likely to register and their families are less likely to consent to deceased organ donation compared to the remaining general public. There is an opportunity to build support for organ and tissue donation in these two large ethnic communities in Canada.