David Foster wants you to become an automatic organ donor when you die. Unless you register to say “no.”
The celebrated Canadian composer, music producer and Grammy collector is throwing his star wattage behind a new campaign for “presumed consent,” an approach that makes all Canadians potential donors unless they explicitly opt out of the system.
It’s a contentious idea, but one Foster believes would increase the supply of organs for the more than 4,400 gravely ill Canadians who need transplants in a country where 230 people died on the waiting list in 2012, the last year for which figures are available.
“Opt-out, really, it makes so much sense,” Foster said in an interview from Los Angeles. “Hey, you’re an organ donor unless you say you don’t want to be one. That makes perfect sense.”
Foster’s interest in organ-donation policy arose out of his work supporting the families of children waiting for or recovering from transplants. He started the David Foster Foundation in the mid-1980s after meeting a young girl from his home town of Victoria in a Los Angeles hospital where she was waiting for a liver transplant.
The experience had wiped out the girl’s family psychologically and financially, and Foster offered to help in a small way by flying the child’s sister to L.A. for a visit.
Since then, his eponymous foundation has scaled way up, supporting as many as 200 Canadian families annually and raising as much as $5-million a year, most of it at a celebrity-soaked annual gala. (This year’s is Sept. 27 in Calgary.)
Foster is perhaps the most prominent Canadian to call for presumed-consent laws, but he is not the first.
Politicians in at least two provinces, Prince Edward Island and Nova Scotia, have floated the idea as a way to increase this country’s generally dismal deceased-donor rate of 15.5 deceased donations for every million Canadians, which lags well behind that of star performers like Spain (35.1 per million) and Croatia (36.1).
Yet presumed consent has never taken off here, in part because of legal and ethical worries. But the real problem, transplant experts say, is that grief-stricken families have the final say on what happens to their loved one’s organs, whether consent is presumed or not.
“Most of the so-called ‘presumed consent’ laws are in fact ‘soft’ laws which are not fully applied,” Dr. Rafael Matesanz, the director of Spain’s National Transplant Organization, said by e-mail. “In fact, the family is always consulted and its decision is mandatory. There is, however, a feeling of ‘mythic’ solution in the countries with an ‘opt-in’ legal approach. But there is not a single example in the world of maintained increases in organ donation after changing the law.”
Timothy Caulfield, a professor of health law and science policy at the University of Alberta, said Canada’s poor donation rate could be attributed to anything and everything, from the lack of a nationally co-ordinated system to the way families are approached to the fact that an organ-donation culture isn’t deeply rooted across the country.
“You really have to take a system-wide approach,” he said. “I know it’s a boring response. But it really is true. Otherwise people would have solved this problem all over the world.”
Even within Canada, rates vary wildly – in 2012, Ontario boasted a deceased-donation rate of 18.7 per million, followed by 17.8 in the Atlantic provinces, 14.9 in Quebec and 11.5 in the West.
Could presumed consent be the first step toward improving those figures and saving more lives?
The reality of the de facto family veto is little understood outside the transplant community. Most Canadians think if they sign a donor card or express their wishes through an online registry, their organs will be given to someone who needs them. But cards and registries are just a means to help persuade the next of kin. Families are much more likely to say “yes” to donation if shown proof of their loved one’s intentions.
In Ontario, “it is law that we approach the family and obtain consent,” said Ronnie Gavsie, chief executive officer of Trillium Gift of Life Network, the provincial agency that co-ordinates deceased donations. “But we have also been advised or told that physicians will not move ahead if the family wishes them not to.… They say, ‘We’re not going to add to their grief.’”
What happens in the hospital setting is critical, Gavsie added.
Matesanz pointed to having one critical-care doctor at every hospital to champion transplantation, and training of medical staff to delicately approach distraught relatives, as more effective measures to boost donation rates.
This doesn’t deter Levi Sampson, president of the Harmac Pacific pulp mill in Nanaimo, B.C., and a member of the board of the David Foster Foundation. Together with two others, he co-founded the “Because I Can Project,” an online push for presumed-consent laws in Canada.
“I think it would increase the number [of deceased donations] drastically,” he said. “People often don’t take time to sign up to become an organ donor and that can be for a variety of reasons. Usually it’s just because it’s not in the forefront of people’s minds. People have busy lives and schedules.”
Sampson said that, with Foster’s support, the two organizations plan to put renewed pressure on politicians.
Prime Minister Stephen Harper, his wife Laureen and federal Health Minister Rona Ambrose have all attended the David Foster Foundation’s annual gala in the past, and Ambrose and Laureen Harper launched a social-media awareness campaign for organ donation last year.
But Ambrose does not seem keen to embrace presumed consent. “In Canada,” she said by e-mail, “the choice to be an organ donor is voluntary and decisions around how Canadians signal consent are made by the provinces and territories who work very closely with Canadian Blood Services.”
People on both sides of the presumed-consent debate can agree on one thing: Canada needs to act to make organs available for people like 14-month-old Aurora Blomerus.
She is waiting for a small intestine, liver and pancreas, organs she needs after suffering a rare birth defect called gastroschisis, in which the fetus’s intestines stick out of its body through a hole near the belly button.
After the family relocated for treatment at the Hospital for Sick Children in Toronto, the David Foster Foundation helped pay rent for her parents at Ronald McDonald House and gave them money for groceries while her mother, Nicole, looked for a local nursing job.
“Without David Foster we wouldn’t have been able to make it,” Nicole Blomerus said. “I literally don’t know what else we would have done.”
Although Foster’s charity work is focused on families with young children on the waiting list, he hopes that presumed consent would make organs available for people of all ages.
Still, even he acknowledges the real power will remain with family members, no matter what law is on the books.
“I think [opt-out] would absolutely make a difference – if you’ve talked to your family. If you haven’t talked to your family,” he said, “you’re screwed.”
HEALTH REPORTER — The Globe and Mail
Published Sunday, Sep. 21 2014, 12:00 PM EDT
Last updated Monday, Sep. 22 2014, 8:49 AM EDT