Imagine that a member of your family is kept alive — just — by dialysis sessions three times a week, all the while waiting for a kidney transplant.
This, unfortunately, is a situation that many Canadian families face. Despite 2,155 successful organ transplants in Canada in 2009, 249 people died while on the waiting list and hundreds of others withdrew from the waiting list due to deterioration in their health.
Currently, 1,525 people are waiting for organ donations in Ontario alone. In the future, because older individuals have a proportionately greater need for organs and offer up a lower supply, the excess demand for organs may worsen as the population ages.
Part of the solution is to increase the supply of organs. How?
The main source of donated organs — 75 per cent in 2008 — comes from “cadaveric donors,” individuals who are pronounced dead before organs are transplanted.
Around 80 per cent of Canadians say that they are in favour of organ transplants, yet in regions where citizens can register for organ donation only about 20 per cent sign up. While there may be many reasons for this disconnect between intentions and actual behaviour, one explanation is the policies for giving consent. Simple solutions could give second chances for thousands of Canadians, without coercing people into donating their organs.
Canadian provinces follow a policy of informed consent: individuals must actively express a willingness to become an organ donor (they must “opt-in”).
In Quebec, Alberta, Manitoba and Saskatchewan, individuals must sign either the back of their health care card, use a sticker, or fill out a separate form to become a potential donor. Ontario and B.C. have organ donation registries, requiring individuals to sign up.
In practice, next of kin have final say in deciding whether an individual’s organs will be donated, allowing physicians to maintain a high level service with grieving families.
In contrast to this approach, many European countries follow a policy of presumed consent: people are presumed to have given consent to donate organs unless they actively decide to “opt-out” of an organ donation plan. The family veto option is informally applied in many cases.
Whether the default consent is presumed or informed has a significant impact on organ donations. On average, presumed consent results in donation rates roughly 20 to 30 per cent higher than informed consent.
The trouble with presumed consent is that the state appears to be coercing individuals, so it may not receive much public support. Better options to increase donation rates would be called “embedded request” or “mandated choice.”
Under both models people are free to choose any option — yes I will, no I won’t, uncertain. People are frequently asked to make a choice with embedded request, whereas under mandated choice individuals are compelled to do so.
Policy-makers must not forget that individuals lead busy lives, do not always use good sources of information, and must make many decisions each day. Individuals are not likely to give a lot of attention to one issue, and are not always well placed to make decisions with regard to a low-probability, psychologically stressful event, such as organ donation.
So what does this mean for organ donation policies?
For starters, governments should habitually request that individuals provide their decision to donate. Further to verbal or written requests for consent upon government-issued ID card renewals, embedded requests should also appear on driver’s licence renewal forms, tax forms, etc. This, coupled with an easy-to-use donor registration website, should bolster donation rates. Some regions, such as Ontario and B.C., are gradually moving toward this type of frequent-reminder system.
A bolder yet uncertain approach would be for governments to adopt a partial mandated choice model whereby individual adults have a mandatory box in their driver’s licence or health-care card renewal form asking them their decision to donate.
Information could be sent to individuals ahead of time to help them make this choice, and without filling this box — answering either: “I know my decision” (yes or no) or “I am uncertain” — individuals would not receive their government-issued card. Further, individuals could also be verbally asked whether their family members are aware of their decision.
Without a major fear of overruling a potential donor’s wishes, either model would allow families a right of refusal. Also, because roughly 10 per cent of organ donors in Canada come from children under the age of 18 — below the registration age — their parents would still have the power to consent.
By moving toward a consent model that motivates people to make organ donation decisions, individual freedoms are still recognized, but the likelihood that people make consent decisions that are good both for them and for society would improve.
Hundreds of Canadians die while waiting for organ transplants each year. A broad system of repetitive requests or mandated choice model would improve the level of organ donations and greatly reduce avoidable deaths.