Nfld. & Labrador

N.L. needs organ donor education before an opt-out program, experts say

As Nova Scotia forges ahead with presumed consent for organ donation, those involved with it in N.L. say there's a lot of work to be done in this province.

Families, doctors need to discuss donation well ahead of time: transplant association

Jonathan Hickman received a kidney from his sister when he was 45, and now tries to raise awareness about organ donation through the Canadian Transplant Association. (Paula Gale/CBC)

January 18, 2015 is a day seared into Jonathan Hickman's memory. 

That's the day he flew to Halifax with his sister, so she could donate one of her kidneys to replace one of his, which was damaged at birth. 

"I'm one of the lucky ones," he said, recalling the 45 tired and worn years prior to the transplant, where he missed out on things like spending time with his young family due to his compromised health. 

"I've got a new life."

Now, as the director of Newfoundland and Labrador's chapter of the Canadian Transplant Association, he's watched with interest as Nova Scotia introduced legislation last week to make that province the first jurisdiction in North America to have presumed consent for organ and tissue donation.

Once passed, that means most Nova Scotians will automatically be signed up to donate organs, and would have to opt out of doing so.

Presumed consent means people must opt out of becoming an organ donor. (Shutterstock)

Hickman would love to see Newfoundland and Labrador follow suit — with a catch.

"I think it's an important step forward to helping awareness of the importance of organ donation," he said, "providing there's an education component that goes with it."

Uncomfortable discussion

About 4,400 Canadians are waiting for organ donations, said Hickman, although how many of those are Newfoundlanders and Labradorians is hard to discern. All organ donation happens out of province, either in Halifax or Toronto, and many people in need from this province spend chunks of their life waiting in those cities. 

In order to lower the number of people waiting for an organ, education has to happen — on both sides of the gurney, said Hickman.

Doctors and other medical professionals need training to know how to broach what can be a difficult conversation, while families need to know they should be having donation discussions well ahead of the fateful day.

"That's really where the biggest catch is right now. People keep saying, 'oh yes, I would definitely love to pass on my organs,' but they don't let their family members know," he said.

"When that unfortunate day happens, the emotions sometimes overrule what your final wishes are. So if you don't have that conversation well in advance when things are good, it can sometimes be missed."

To help those conversations happen, Hickman hopes the provincial government will pick up the reins and provide organ donation education and awareness.

'Very poor' donation rates

Newfoundland and Labrador's health minister agreed that education is key in increasing organ donation here.

The province's donation rates "are very poor," and "we must do better," John Haggie told CBC Radio's St. John's Morning Show.

"The only question really, is how do you do that?" he said, adding that the answer does not involve joining Nova Scotia in an opt-out program, for the foreseeable future. 

Health Minister John Haggie says Newfoundland and Labrador won't follow in Nova Scotia's footsteps with presumed consent at this time, but will be watching how it unfolds. (CBC)

Haggie pointed to Spanish and Portuguese examples where presumed consent laws did not lead to a boost in organ donations. But he said that doesn't mean he won't be paying attention to Nova Scotia.

"The bottom line is, if they can show it works, then we're interested," he said.

What has worked in Spain and Portugal, said Haggie, was bringing in more training for health care workers and awareness programs, a move he said Newfoundland and Labrador is already mimicking.

"We started putting those supports in place about two years ago, and we have not really yet seen what the results of that are," he said.

In the meantime, people can still choose to become organ donors by updating their MCP card, a process Hickman said takes just a few minutes to do, by filling out an online form and sending it in.

Read more articles from CBC Newfoundland and Labrador

With files from the St. John's Morning Show

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