Progressive donation legislation saves lives, inspires innovation
Thursday, April 21, 2022 - 03:31PM
Each year, hundreds of Canadians die waiting for an organ transplant. These deaths are preventable, as only one in five Canadians has registered their decision to donate.
In January 2021, Nova Scotia became the first jurisdiction in North America to introduce presumed consent legislation for organ and tissue donation rather than relying on the province’s nearly one million residents to opt-in to donate.
Nova Scotians can opt out of becoming a donor at any time and families are consulted about their loved one’s decision. The law does not apply to tourists or university students from other provinces or countries and only applies to people who have resided in Nova Scotia for at least 12 months. In addition, people under age 19 and those without decision-making capacity are exempt and will only be considered donors if a parent, guardian or substitute decision-maker opts them in. Since early 2021, 57,382 people have opted out of deemed consent – about five per cent of the eligible donor population.
Under Nova Scotia’s Human Organ and Tissue Donation Act patients are referred to provincial organ and tissue donation programs to evaluate donor eligibility. According to Canadian Blood Services, one organ donor can save up to eight lives and a tissue donor can help up to 75 people. 2 Organ donation can include kidneys, pancreas, heart, liver and lungs and tissue donation, cornea, sclera, skin, bones, tendons and heart valves.
National Organ and Tissue Donation Awareness Week (April 24 – 30) is an opportunity to reflect on Nova Scotia’s journey and progress since the presumed consent legislation came into effect. The legislation makes it possible for more Nova Scotians to donate their organs and tissues at the time of their death.
The introduction of the new act also presented opportunities to modernize the technology landscape of the province’s Legacy of Life Organ Donation Program, Regional Tissue Bank and Multi Organ Transplant Program to better support patients and families and capture, store, exchange and report data to meet legislative requirements, including:
- % of potential organ donors referred
- Organ consent rates
- Organ donation rates/million
- % of potential tissue donors referred
- Tissue consent rates
- Tissue donation rates/million
- % deferrals for tissue & organs due to insufficient resource capacity
- Wait times for kidney transplantation
Nova Scotia Health’s Information Management and Technology team in collaboration with representatives from the three programs, identified the following priorities:
- enhance patient safety and support
- streamline end-to-end workflows and facilitate seamless data exchange
- simplify data collection
- track and manage patient data for regulatory requirements, reporting and research.
The priorities established also aligned with the Pan-Canadian Organ Donation & Transplantation Collaborative, which includes Health Canada, Canada Health Infoway, Canadian Institute for Health Information and Canadian Blood Services. These partners are working to connect systems across Canada to develop national standards to manage organ and tissue donation and transplantation resources more efficiently. Their goal is to increase the number and quality of successful transplantations for better patient outcomes.
Efforts to improve standardization, workflows, automation and support for donors, recipients and their families continue and several milestones have been achieved. For example, two custom web-based tools were developed to support the Legacy of Life Program:
- a death chart audit tool to review all ICU and emergency department deaths for deceased donor referral potential and to identify any missed donor and education opportunities for staff
- a donor management system to transform the program from manual, duplicative, paper-based processes to a more efficient online process. For the Regional Tissue Bank, automated email notifications have been created to notify the Regional Tissue Bank within 24 hours of potential donor referrals for patients under 71 years of age, when patient deaths are recorded in the province’s three hospital information systems. This ensures potential donors aren’t missed.
Since December 2020, 547,245 Nova Scotians registered their decision to be an organ and/or tissue donor – about 54 per cent of the eligible donor population. Since the legislation was introduced in Nova Scotia:
- + 1,500 people referred as potential tissue donors, an increase of 228 per cent compared to 2020
- + 200 referrals made for organ donation, +130 per cent over 2020
- 155 tissue donors in 2021, +40 per cent over 2020
- In 2021, there were 23 organ donors and 112 organ transplants – 79 kidneys, 30 livers and three hearts.
Nova Scotia has made progress in the areas of family support and IT to accommodate new referrals, improve databases to support clinical work and family care, staff and physician training, a new family support program and updated public education.
“While we are pleased with our success to date, we still have work to do. Our commitment to the education and promotion of organ and tissue donation, combined with the generosity of Nova Scotians, will prove to change the lives of those awaiting life-saving and life-changing transplants for years to come,” said Vickie Sullivan, Interim Vice President, Operations Central Zone, Nova Scotia Health.