Organ-Donor Registry Is No Dead Giveaway

MacAdam-Worobey says she feels helpless, and frustrated by the long wait for a donor organ. Diagnosed with six years ago with emphysema--a condition characterized by damaged alveoli--her mother is constantly tired, weak, and short of breath. There is no treatment. "The transplant is the only thing she has left," MacAdam-Worobey says on the line from her mom's White Rock home. "Your mind just spins, trying to think of something you could do to help."

According to the British Columbia Transplant Society, nearly 85 percent of people in the province support organ donation, but not even 15 percent are registered to be donors after they die. Those in the latter group have given their consent through the province's registry, which came into effect in 1997. Having a decal on your driver's licence doesn't cover it anymore.

Potential donors must fill out and sign a form and mail or fax it back to the society (www.transplant.bc.ca/). Unlike the previous system, the registry lets you select which organs you want to give. You can also choose to donate organs needed for transplant only, or for transplant and transplant research. As well, you can specify that you do not want to be a donor and can change your decision anytime.

However, while watching her mom wait, MacAdam-Worobey has found herself questioning the registry's efficacy. The current program involves more effort than indicating a straight yes or no when renewing your driver's licence. And although signing up probably only takes about 10 minutes, in a world where people don't have time to make a sandwich or call friends, it's possible some folks find the registration process a hassle.

"It's inconvenient, and a lot of people are lazy," says MacAdam-Worobey. Registering to be a donor also forces men and women to face their own mortality. "It's an uncomfortable thing for a lot of people....Or maybe it's a cultural attitude; some people might think that by registering--just like writing their will--they're testing fate. If we could just leave that behind...

"I'm not sure I have the answer. But if 100 percent of the population were enrolled, there most likely would have been a lung for my mom by now."

In fact, fewer than one percent of deaths result in potential organ donation, according to the BCTS. People must be declared brain-dead through tests done by two doctors who are not connected with the transplantation process. There is a chronic shortage of hearts, lungs, kidneys, and livers in B.C. More than 460 people are awaiting transplants for these organs, and another 450 are on the list for corneas. There are 14 people waiting for heart transplants, double the usual number. Some average wait times, as of last year, were 2.4 months for hearts, nearly five years for adult kidneys, and 8.8 months for lungs.

Sally Greenwood, communications director for the BCTS, says the group is always trying to get donor rates up. Knowing that their relative has given another human being a new chance at life often offers grieving families something positive to hang onto.

"It's still amazing to me how there is only a one- or two-degree separation of people I know who are needing a life-saving transplant," Greenwood said in a phone interview. "It's not about Mary in Prince George; it's about people who live two doors away; it's about you and me....And despite people's best interests, chances are they will never be in a position to be an organ donor....It's the ultimate form of recycling."

According to Greenwood, there are some positive reasons for the low number of organs available in our province. Alberta has 55 percent more car-accident mortalities than B.C. does, she said. The U.S. has a higher percentage of donors than we do, thanks to deaths from gunshot wounds. And B.C. has many solid safety measures, like requiring cyclists to don bike helmets.

There is ongoing debate about the best ways to operate donor programs, which differ significantly around the world. Spain, Belgium, and France, for example, have what's known as the "opt-out" system, aka presumed consent. People are considered donors unless they explicitly state that they do not want to be. In Austria, people who refuse to be donors are automatically placed at the bottom of the waiting list if they ever need a transplant themselves. Spain has a high donor rate because of "transplant coordinators", people who monitor emergency departments and identify potential donors, then discuss the possibility with the patients' families.

Greenwood explained that although the opt-out program might seem appealing to some people, the reality is that the relatives of a deceased person still have a say in the process; they can veto the plan to remove their kin's organs.

Another advantage to the registry, Greenwood said, is that doctors can access it 24 hours a day, making it easier to know a deceased person's wishes. Before the registry came into place, if someone ended up in an emergency room without his driver's licence (or if he didn't have one in the first place), hospital staff had no way of knowing whether he wanted to donate or not. And family members, unaware of their loved one's desires and asked the question at such a traumatic time, tended to err on the side of caution and not donate. Now, health professionals have instant access to the database.

"It's a really hard health-care issue," Greenwood said. "Even through legal consent, the family is involved. Doctors can show them the signed registration. They can see the signature and the thought that went into that decision, and say, 'This is what they really wanted.' "

For MacAdam-Worobey, being a donor does more than give someone another chance. The act, she says, adds meaning to your afterlife.