More than 4,600 Canadians are on a wait list for transplant. Yet, only about 2,500 organs are transplanted annually. For those in dire need of a kidney, liver, lung or heart, those are not good odds. About 250 patients on the wait list die each year, and many more live greatly diminished lives, tethered to dialysis machines or oxygen tanks.
In opinion polls, about 90 per cent of Canadians support organ donation. But only about 20 per cent have actually consented to donate, by signing their health card or driver's license, or registering online. (The precise method varies by province, as do the rates of consent.)
When the grim, befuddling statistics are discussed, someone invariably suggests that the solution is to force people to opt out of donating rather than opt in. The latest to embrace the approach is Saskatchewan Premier Brad Wall. "As a government we're thinking we'd like to move towards presumed consent," he said in response to a provincial legislative committee report. (The committee actually rejected the idea, saying a presumed consent law would trigger a legal challenge and could well be deemed unconstitutional.)
Countries with presumed consent laws, such as Spain, Belgium, Austria and France, have some of the world's highest organ-donation rates. But we have to be careful not to assume there is a cause-and-effect relationship. Let's take Spain as an example, because it is the world leader in organ donation with a deceased-donor rate of 35.1 per million population. (In Canada, by comparison, the rate is 18.2 per million.)
Spain adopted presumed-consent legislation way back in 1979. For the first decade, the donation rate barely budged. Then, in 1989, the country created the Organizacion Nacional de Trasplantes, a comprehensive transplant co-ordination system that includes a national registry, physicians dedicated to organ retrieval in most hospitals and a public-education campaign. Then, the number of organs donated and the number of transplants conducted soared.
One of the great fallacies about presumed consent is that it means organ donation is "mandatory." It is not. Individuals can opt out – and in Spain, about 15 per cent do. In addition, whether there is a presumed consent law or not, families are still consulted. Technically, presumed consent is binding if an individual has not signed the "refusal register." Similarly, the signature on your health card or driver's license is binding. Families don't have a veto, but their wishes are usually respected. It would be cruel to do otherwise.
But relatives refusing to allow organs to be harvested from a loved one is only one barrier to organ donation, and not the most problematic one. It all starts with identifying potential donors – patients who are brain dead or have suffered some form of cardiac death. There needs to be personnel who can confirm brain death or promptly declare circulatory death. A 2014 study in Canada showed there were 3,088 potential donors, but only 592 actual deceased donors. There were another 553 living donors of kidneys and lungs. All told, there were 2,433 organs transplanted: 1,430 kidneys, 537 livers, 226 lungs, 161 hearts, 79 pancreata, as well as donations of intestines, eyes and skin.
Yet, the fact remains that the "conversion rate" in Canada – the number of potential donors versus the number of actual donors – is only 20 per cent. In a country such as Spain, it's twice that – again, not because donation is mandatory, but because they make identifying donors and harvesting organs a priority.
How a grieving family is approached is key. Hospitals that have trained, dedicated staff who do "the ask" have the best donation rates. There also needs to be a trained recovery team to harvest and transplant, and a centralized registry so the appropriate patient can get the available organ promptly.
And the foundation to all this is education – of patients and personnel. The notion of organ donation as a societal good has to be ingrained in the public consciousness, and giving has to be easy and appreciated.
Canada's organ donation system is very much a patchwork. We don't have a national transplant agency, or even a national registry. The task of co-ordinating organ donation has recently been assigned to Canadian Blood Services. But organ donation is very different from blood donation or stem cell donation, so it remains to be seen if that's the way to go.
The lesson here is that simplistic legislative change alone is not the answer. A presumed consent law is, at best, a launching pad for public awareness and creation of a co-ordinated organ donation and transplant system.