Province weighs online registry for organ donors

An easy-to-use system is key to improving rates, advocates say

The province is looking into the possibility of an online organ donor registry, but says it has no timeline on when a decision might be made to move ahead with one or not.

“Anything that we would roll out would need to be easy to use,” said Luke Jackiw, director of hospitals and specialized services with the acute and emergency services branch for the Ministry of Health.

Jackiw said the ministry is doing “preliminary work” to assess opportunities to implement a donor registry, but no decisions have been made.

“The most important thing about that registry is getting that information in the hands of health-care providers at the point of care when a decision is required,” he said. “So we need to work within our Saskatchewan-based IT systems to ensure that happens.”

Advocates of online organ donor registries say the ease with which a person can register would boost donation rates. Other countries use an opt-out, or presumed consent, model to the same end.

Spain, Croatia and Portugal all have presumed consent systems and donation rates are higher than 25 donors per million population.

In 2017, Saskatchewan’s rate of organ and tissue donation from deceased donors was 14.6 donors per million population, compared to 12.2 in 2016.

In a 2016 interview, former premier Brad Wall expressed his personal views that if it were possible to have presumed consent that’s “consistent with the rights of Canadians” that it would be a great thing for Saskatchewan to lead the country in.

But a committee formed at the request of former health minister Dustin Duncan in May 2016 to look into ways to boost the province’s organ donation rate did not recommend presumed consent, saying implementation of such a system would likely be challenged in the courts.

That message stands today. “Any decisions regarding opt-out or a presumed consent model are on hold,” said Jackiw. “We’re focusing our efforts on the improvements noted in the 2017 speech from the throne.”

The speech, made on Oct. 25, 2017, outlined four main strategies to help improve the notoriously low organ donation rates in the province.

The government invested $500,000 toward implementing a donor physician/nurse co-ordinator model, expanding the donation after cardio-circulatory death (DCD) program, implementing a routine notification of in-hospital deaths to the organ donation program and increasing public awareness.

Saskatchewan saw three DCD donations in 2018, which Jackiw credits to the expansion of the DCD program and four donor physicians were hired in addition to registered nurse co-ordinators to support donors and their families.

(DCD happens when a donor has suffered “devastating and irreversible brain injury” and may be near death but does not meet the formal brain death criteria, according to Jackiw. In these cases the family has decided to withdraw care and it’s when the patient’s heart stops beating that the organs are then recovered.)

Last spring, the ministry — in partnership with the Saskatchewan Health Authority (SHA) — launched a four-week multimedia awareness campaign that was rolled out over social media and in movie theatres, health-care facilities and local bars and restaurants.

“It was important and still is important to get that message out there,” said Jackiw. “The more we can keep organ donation at the forefront, the more conversations people have with their families and the higher the likelihood of a donation occurring down the road.”

Final numbers aren’t available for 2018, but Jackiw said it looks as if the deceased donation rate appears to be similar to that of 2017.

For residents concerned about donation rates in Saskatchewan and are considering moving to a province with higher rates, Jackiw pointed toward national efforts — like the Canadian Blood Services kidney-paired donor exchange program — to provide equal access to all Canadians.

“When a donation does occur ... there is every attempt to share every single one of those organs with patients and ensure they’re going to the patient with the highest needs,” he said.

As far as an online registry, Jackiw says that’s only part of the puzzle because in the end, family members or next of kin have the final say.

“I think it’s an important tool to start the conversation, but the most important part about that is that conversation with your family,” said Jackiw.

“It doesn’t matter if you have a registered intention ... because in that moment health-care providers look to a patient’s family, look to a patient’s next of kin, for direction for what to do.”