Fragmented organ donation programs hinder progress ================================================== * Wayne Kondro Comparisons of international organ donation rates, systems, policies and practices often suggest most developed nations are playing chess, while Canadians are playing checkers. So varied are the nation's transplant programs that it's impossible to characterize national practice, other than to say it's quintessentially Canadian; a reflection of the fractured jurisdiction over health care. As transplant physician and Canadian Society for Transplantation President Lori West notes: “It's the eternal divide in Canada. It isn't a system. It's grown and developed and evolved as provincial transplant organizations. It hasn't evolved as a system at all, so it's not surprising that it's very different from province to province.” ![Figure1](http://www.cmaj.ca/https://www.cmaj.ca/content/cmaj/175/9/1043/F1.medium.gif) [Figure1](http://www.cmaj.ca/content/175/9/1043/F1) Figure. Some experts say a Canada-wide organ registry is needed; others disagree. Here, surgeons perform a mother to daughter kidney transplant. Photo by: Canapress Canada's low organ donation rates “may be partly because of our lack of a coordinated, central kind of response to take new ideas and move them forward quickly among provinces,” the University of Alberta professor of pediatrics, surgery and immunology says. “That's why many of us agree that if we had some national agency of some sort . . . we might be able to take some of these ideas that gain success in other countries and apply them to our own populations more quickly and more efficiently.” But Canadian Council for Donation and Transplantation (CCDT) Chief Executive Officer Kimberly Young argues that Canada's organ donation rate compares favourably to other nations, and the system isn't in need of structural reforms. Other countries use different denominators for determining donation rates, so crude international comparisons aren't methodically valid, Young argues. “We certainly have pockets of excellence in Canada that have as high a rate, or higher, from their reporting and their review of medical records.” According to the Canadian Organ Replacement Registry, Canada's crude donation rate for deceased donors in 2005 was 12.8 per million population, well below that of countries like Spain (35.1), Estonia (26.5), Belgium (22.8), US (21.5) and Italy (20.9), as projected by the International Registry maintained at the University of Barcelona. Living donations in Canada are rising, however, and now tally 15.6 per million. But there are significant regional variations in deceased and living donation rates. Deceased donations range from 5.1 in Manitoba to 17.9 in Quebec. Living donations range from 7.0 in Quebec to 19.9 in Alberta. Some 3974 Canadians were waiting for an organ transplant on Jan. 1, 2006, compared with 2592 in 1995. Some 275 Canadians died waiting last year. There were 1904 transplants last year, compared with 1542 a decade earlier. There are also significant provincial variations in wait times for transplants. A recent study of 7034 dialysis patients (*CMAJ* 2006;175[5]:478) found people under 40 waited a median 8 years in Ontario for a new kidney, compared with 3 in Alberta. In the face of those rates, variations and wait lists, a number of issues and options have surfaced on the organ donation horizon, including: **Creation of a national registry and mechanism for allocating organs, similar to the US United Network for Organ Sharing (UNOS)** Canada does not have a nation-wide wait list, allocations, or mandatory organ sharing for priority cases (after taking into account factors like the risk of ischemia in cases where an organ is needed on the other side of the country). The London Transplant Program maintains a list of “status 4” urgent cases, disseminated weekly. There's also some sharing among programs, although no one keeps formal statistics on frequency and many say it's quite limited. The cardiac transplant community seems the most advanced, with a voluntary agreement that gives preference to urgent cases under a status system. The liver community may adopt a similar agreement. There's little, if any, kidney sharing, ostensibly because dialysis allows provincial programs to keep most recipients alive while waiting. **A national strategy to improve donation rates and donor management practices, similar to the “Breakthrough Collaborative” initiated by the US Department of Health and Human Services.** Ontario and Quebec are informal partners in the US program, and the Western provinces hope to establish a pilot collaborative soon. But insofar as Canada has anything like an agency promoting coordination and harmonization, it's the CCDT, an independent non-profit corporation, established in 2001 and given roughly $18 million over 5 years to provide advice to the Conference of Deputy Ministers of Health. It has undertaken 7 studies: definition and determination of brain death; donor management models; highly-sensitized patients; paired exchange; public awareness; diverse communities and religious faith; and most recently, donation after cardiac death (*CMAJ* 2006;175[8 suppl]:s1-24). CCDT recommendations aren't binding and, consequently, implementation has been predictably checkerboard. **Donation after cardiac death (DCD)** Although now widely practised in the US and several European nations, there have only been 3 cases in Canada, all in Ontario, and initiated at the behest of a donor's family. Only Ontario's Trillium Gift of Life Network has formally adopted DCD as official policy, although Quebec is on the cusp of doing so and several others will likely follow suit. Ontario has also developed rapid response units (some 20 ICU-trained nurses) to help hospitals implement DCD. Trillium President Dr. Frank Markel says early returns in New England suggest DCD could increase organ availability by 30%, a substantial hike given that organs are now obtained only from people suffering brain death (just 1.4% of all deaths). **Presumed consent** Currently, people can “opt in” to donate after they die by either signing the form on their driver's license, or through the explicit consent of surviving family. Presumed consent works on the principle that everyone's a donor unless they've specified otherwise in advance. Variations of this practice exist in Europe. Austria has the harshest form, placing those who decline to donate at the back of the line in the event they need an organ. Ontario rejected presumed consent on the grounds that Canadian society isn't ready, but Markel says the province is considering the notion of “first person consent,” i.e., automatically harvesting organs when a donor card has been signed. Canadian practice has traditionally been to leave the final decision to families. **Mandatory hospital reporting of ICU or emergency department deaths** The US passed “routine notification and request” legislation last January. Ontario requires reporting by 12 Type A hospitals and will add 9 this fall. BC, Manitoba and New Brunswick have similar tiered requirements (by hospital size, with different reporting criteria in different jurisdictions), and Alberta has legislation in the works. Most take an educational, rather than a punitive approach. Ontario has achieved a 70% compliance rate and is considering mandatory reporting for all potential tissue (as opposed to solid organ) donors. Some Ontario hospitals have adopted voluntary reporting policies when potential donors demonstrate certain clinical triggers, such as specific scores on a coma scale. **Incentives for donation** The US Organ Procurement and Transplantation Network and UNOS are examining options like reimbursing donor's funeral expenses; medical leave for donation; priority access for previous donors in the event they need an organ; and even, issuance of a medal of honour. France requires donor reimbursement for travel and accommodation costs, and the UK permits such reimbursements, including lost wages. The state of Pennsylvania has launched a pilot project to provide $300 toward funeral expenses of deceased donors. BC has a pilot program to reimburse living donors for “reasonable expenses” (such as travel for tests, appointments and hospitals admissions, accommodation or medications after discharge) up to $5500. The CCDT will soon release a report on incentives, and Ontario is creating a green ribbon task force on the issue. Given the variations and vagaries in policy and practice, many believe there's a need for a national registry and allocation system, as well as some form of oversight agency, analogous to the Canadian Blood Services. West and the CST's cardiac group believe both are necessary, although she quickly adds the association itself hasn't adopted an official policy. Markel says a national wait list for highly-sensitized patients (like many women as a result of pregnancy) would be valuable but surmises that a national oversight agency won't fly because of jurisdictional wrangles. CCDT council member Dr. Sam Shemie says the advisory body isn't interested in becoming a national oversight agency but when its mandate expires next March, it may have an interest in maintaining separate national registries for highly-sensitized patients and paired exchanges between living donors from different provinces. “We're not there to enforce or interfere with the provincial organ procurement organization's role,” says the Montreal Children's Hospital pediatric critical care physician. Young contends more debate is needed before moving to a national system. “There's one key thing for us. We don't want to replace what's already working well, and nobody wants to pay for things twice.” Others argue a national agency would likely yield higher donation rates through standardization of organ management practices and improved donation education programming, particularly for front-line physicians. There's still “extensive” variation across Canada in the way potential donors are identified and families are approached, and few jurisdictions provide doctors with instruction about best practices, says Fides Coloma, president of the Canadian Association of Transplantation, which represents front-line health care professionals like nurses and organ procurement coordinators. There must be far more physician awareness of their role in organ donation, adds Dave Smith, president of the Canadian Transplant Association, which represents organ recipients. “Are doctors saying: ‚you know what, we have an organ donor here,' or do they just steer clear of it? Why don't we make ‚the ask' a mandatory thing in a doctor's routine?”