Should family have the last word on your organs?

In the wake of Humboldt bus tragedy, questions arise about stressful choices and donor registrations

Here’s what bothers Sidney’s Dwayne Rowe: Even if you have registered as an organ donor, family members can stop hospitals from retrieving your organs.

“I just don’t understand it,” he says. “How could you have a clearer demonstration of intent than taking the time to register with B.C. Transplant?”

Here’s how the transplant authorities reply: It’s rare for grieving families to refuse permission — but it’s sure less stressful on them if you have made your wishes known.

This comes as donor registrations surge following the Humboldt Broncos bus crash. In B.C., more than 3,000 people have signed up this week, inspired by the example of Humboldt player Logan Boulet, whose organs were expected to be shared among six people after he was taken off life support.

The increase is good news, because despite Canadians’ good intentions — 90 per cent of us say we’re willing to be donors — only 20 per cent actually register.

That low participation rate reduces odds that are already slim: Only one per cent of us die in such a way that allows our organs to be donated. Even in 2017, when there were a record number of transplants in B.C., the organs of just 121 deceased donors were used. That’s almost twice as many as in 2013 but still not enough to meet demand. In 2012, more than 250 Canadians died while awaiting transplants.

Numbers like that only fuel Rowe’s frustration. With such a need, he wants to know why families get the final say when the deceased has already made his or her wishes clear.

Rowe has a personal stake in this issue. His 37-year-old grandson, Tyler, is on his third transplanted kidney. Tyler’s first came at age nine when his father surrendered a kidney as a living donor, but the one he has had since 2010 came from a five-yearold girl who died. Tyler is thriving today because that girl’s parents gave permission for her organ to be used. That’s great, but what about those who are denied transplants because distraught family members, in the grips of crisis, can’t bring themselves to make a similar choice?

That doesn’t happen very often, says Ed Ferre of the province’s B.C. Transplant agency: “It’s actually quite rare.” In fact, a number of measures have helped increase donor rates recently.

Here’s how it works, the agency says: To be an organ donor in B.C. you must be in a critical care unit on a breathing machine, with no hope of recovery. Once death is declared or imminent, hospitals check with B.C. Transplant to see if you have registered as either giving or refusing permission for organs to be taken. Then family are approached — B.C. Transplant prefers its people to do the asking — to see if you have said anything about organ donation, one way or another (sometimes people have changed their minds without changing registration status).

It’s a relief to most families when B.C. Transplant can show them your written wishes. That takes pressure off people who, already reeling, don’t need the extra burden of deciding whether or not to allow your organs to be donated. “It’s incredibly stressful on families,” Ferre says.

The agency encourages people to not only register but to tell their families. That’s what Boulet did, Ferre said.

Some countries — Spain is an oft-cited example — have tried to push up organ donations rates by adopting what is known as presumed consent, meaning that permission to extract organs is assumed unless the person has specifically opted out. Saskatchewan recently pondered going that route. Even in jurisdictions with presumed consent, next of kin get the last word, though.

“You can’t push a family aside,” Ferre says.

B.C. has had success by working within the health system itself. There are designated doctors in ICUs to champion organ donation, and people inside regional health authorities who work to make donation something that is automatically considered when a patient dies. Victoria General gained the ability to offer donation after cardio-circulatory death in 2013, followed by Royal Jubilee a year later. Across the province, B.C. Transplant has seen a 40 per cent increase in hospital referrals of potential donors in the past two years.

The best thing people can do is make their wishes known, Ferre says. “What’s encouraging is the number who are registering now.”

You can verify whether you’re signed up by going online to register.transplant.bc.ca/ verification. You’ll need your personal health number, which for most people is now on the back of their combined driver’s licence and B.C. services card.