Preventable harm in the Canadian organ donation and transplantation system: a descriptive study of missed organ donor identification and referral

PURPOSE: Deceased organ donation is predicated on timely identification and referral (IDR) of potential organ donors. Many Canadian provinces have legislated mandatory referral of potential deceased donors. Untimely or missed IDRs are safety events where best or expected practice has not occurred causing preventable harm to patients and denying families the opportunity of donation at end of life (EOL) as well as denying transplant waitlist patients access to lifesaving organs. METHODS: We requested donor definitions and data to calculate IDR, consent, and approach rates from all Canadian organ donation organizations (ODOs) for 2016–2018. We then estimated the number of missed IDR patients who were eligible for approach (safety events) and the associated preventable harm to patients at EOL and on transplant waitlists. RESULTS: Annually, there were 63–76 missed IDR patients eligible for approach (3.6–4.5 per million population [PMP]) from four ODOs—three with mandatory referral legislation. Applying each ODO’s approach and consent rates for the corresponding year, there were 37–41 missed donors (2.4 donor PMP) annually. Assuming three transplants per donor, the theoretical number of missed transplants would be 111–123 (6.4–7.3 transplants PMP) annually. CONCLUSIONS: Data from four Canadian ODOs show that missed IDR safety events resulted in important preventable harm measured by a lost opportunity for donation of 2.4 donors PMP annually and 354 potentially missed transplants between 2016 and 2018. Given that 223 patients died on Canada’s waitlist in 2018, national donor audits and quality improvement initiatives to optimize IDR are essential to reduce preventable harm to these vulnerable populations.