TORONTO — Unprecedented access to a database of Ontario organ donors is dramatically changing the way hospitals are getting life-saving donations to desperately ill people, says the head of the province's organ and tissue donation agency.
While donation consent has been captured through the province's health insurance program - OHIP - since 1995, it wasn't until November that the Trillium Gift of Life Network gained real-time access to that valuable information.
"Before, even though people registered their wishes with OHIP, the only way we would know about it is if someone in the hospital or a family member came upon the (health) card while going through the person's wallet," said CEO and president Frank Markel.
"Now, when someone goes into hospital and they're a potential donor, we get their OHIP number from the hospital staff. We then call OHIP and they tell us whether the person has registered their wishes to be a donor or not."
The new process, made possible through a 24-hour phone line that went live in mid-November and operates seven days a week, has already made an impact.
Although health cards for people who registered to be an organ donor carry the word donor on the back, locating the cards, especially in an emergency situation, often proved difficult.
"We really weren't getting many situations where we could identify the donor information from a card in a wallet," Markel said.
While families are still approached about the possibility of donating a loved one's organs, being able to present a paper copy of that person's consent form by accessing the database has gone a long way in informing their decision.
"We had a case recently where family members were divided about whether to agree to donation or not," Markel said.
"When we checked the file the person was registered as a donor, and when we were able to present that information to the family it helped convince them to let us proceed with donation."
It's a welcome change in a province where the current waiting list for organs sits at nearly 1,700 people - a figure that includes both adults and children.
That overwhelming need also saw changes made in December to the way the province asks residents if they want to become donors.
It's called affirmative registration, and the hope is that it will see more people agree to be donors.
More than 900,000 Ontario residents renew their health cards each year. Research indicates that jurisdictions with a yes-only registry, and that no longer ask for no or undecided responses, have experienced an increase in donor registrations, according to the Health Ministry's website.
Markel noted that in one service area in the western U.S. that covers all of Utah and parts of Idaho and Wyoming, a yes-only registry has seen some 70 per cent of the population agree to donate.
In Nova Scotia, where affirmative consent has been the standing policy, 44.3 per cent of eligible residents are on the list.
The current consent rate in Ontario is a paltry 12.5 per cent, or approximately 1.75 million people.
Kathy Gough knows just how life-altering organ donation can be.
The mother from Powassan, Ont., has lost both of her daughters to illnesses following double-lung transplants. The girls, Emily and Jessica, both suffered from cystic fibrosis.
She said donation gave her daughters an opportunity to come home and finish living their lives. In the case of Jessica, whose death came just two weeks ago at age 19, that meant living on her own for a short time and getting a job.
Gough said that although any increase in prospective donors is a good thing, she'd prefer the province adopt a presumed-consent system for organ donation - a method employed in 20 European countries and Singapore.
That system sees people who don't want to become donors opt out by ensuring their name is placed on a national registry.
"It doesn't matter what laws are put in, there's always a resistance to it anyways, but as time goes on people realize, 'oh, that was a good thing,' " said Gough, who thinks it could work in Ontario if the public was better educated.
"The first step is to get the proper educational literature out there. (Organ donation) needs to be more in the public because until they do that, it's not going to be on people's minds."
A 2007 report from the Citizens Panel on Increasing Organ Donations strongly suggested the province avoid a presumed-consent system, saying neither the public, nor doctors, were comfortable with the idea.
NDP legislature member Peter Kormos, who has been leading the fight for presumed consent in the province for years, disagrees with that assessment.
"At first blush, people go 'oh my,' but the more it gets discussed - and it has been discussed reasonably vigorously - people start to reflect and start to change their minds."
“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves