Nova Scotia’s opt-out organ donation registry sees a fraction of expected names

The head of Nova Scotia’s organ donation program is cautiously optimistic the new presumed consent law is being embraced after seeing the latest numbers on the province’s opt-out registry.

Nova Scotia became the first place in North America to switch to an opt-out organ and tissue donation law on Jan. 18. It presumes all adults consent to be donors, unless they say otherwise.

Just 10 days after the law was implemented, the Department of Health and Wellness says 11,800 Nova Scotians have registered to opt out. That’s about one per cent of the province’s population.

“That number may go up a bit over time,” said Dr. Stephen Beed, medical director of the province’s organ and tissue donation program, Legacy of Life.

Prepared for higher opt-out rate

He said they’ve taken many cues from Wales, which changed its donation law in December 2015. Based on the reaction there, Nova Scotia was prepared to see the registry reflect five to seven per cent of the population.

“Maybe the people that choose to opt out just haven’t gotten around to it yet even though they’ve made their decision,” said Beed. “The general impression I’m getting is that this has been very well received.”

The law exempts children, people who lack decision-making capacity, and adults who have lived in the province for less than a year. Families will still have a final say at the bedside.

Beed reiterated the need for people to talk about their final wishes, as well as educating themselves on what organ and tissue donation entails before making a decision. 

“We’ve known all along one of our challenges is to make sure the public are as informed as they can be,” he said.

Reaching out to marginalized communities

His biggest concern is ensuring that historically marginalized communities are well informed. He said the Health Department has been reaching out to leaders in those communities.

“If some of those groups have specific medical concerns, I’d be happy to make sure that we do our best to connect with them and answer specific medical issues,” he said. “That hasn’t happened a lot and it makes me feel like perhaps there’s a need and an opportunity to have these conversations.”

Beed said he was not aware of any organ donations in the last week as a result of the new program.

The department did, however, receive several new referrals for organ transplants under a new internal system. In the past, people who were qualified to donate organs may have been overlooked because health-care workers didn’t know more about the donation system. It is now mandated that they consult Legacy of Life.

“I don’t view this as something we started a week ago, I view this as something that started a year and a half ago,” said Beed. “I’m under no illusions we have a lot more work to do.”

Last year, there were 34 organ donors in Nova Scotia, which was a record number. 

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