Testing presumed consent for organ donation in a province or region where residents support the notion could help resolve the debate over whether a national "opt-out" system would improve Canada's chronic organ shortage, an expert says.
"From a national point of view, because consent to organ and tissue donation laws are provincially based, we would welcome having a province take a lead on this to demonstrate whether it is effective," says Dr. Sam Shemie, medical director for organs and tissues donation at Canadian Blood Services (CBS) and a pediatric intensive care physician in the Division of Pediatric Critical Care at Montreal Children's Hospital in Quebec. "If Atlantic Canada decides to pursue this, good on them. It would be an example for the rest of us."
A recent survey indicated that a majority of people in Nova Scotia, New Brunswick and Newfoundland and Labrador would support an "opt-out" approach to organ donation. Such programs presuppose the presumed consent of residents to be organ donors unless they take proactive steps to indicate their objections.
Currently, the converse is true. Canadians can "opt in" to donate after they die by either signing the form on their driver's license, or through the explicit consent of surviving family. Traditionally, even if a person has signed a donor card, the final decision has typically been left to families, although consideration is being given to adopting the concept of "first person consent," i.e., automatically harvesting organs when a donor card has been signed (www.cmaj.ca/lookup/doi/10.1503/cmaj.061256). As part of its recent plan to create an "integrated inter-provincial organ donation and transplantation system," CBS proposes to craft strategies that would substantially increase organ donation rate (www.cmaj.ca/lookup/doi/10.1503/cmaj.109-4239).
Although it's long been held that Canadians find an "opt-out" approach somewhat anathema, a Corporate Research Associates Sept. 12 survey of 1200 adults in Atlantic Canada suggests that opinion on the issue is shifting. Some 60% of Nova Scotians support the proposition of presumed consent, as do 56% of people in Newfoundland and Labrador, and 55% of people in New Brunswick (The survey's accuracy was reported at ± 4.9 percentage points, 95 times out of 100).
Although Prince Edward Island residents were not surveyed, the province indicated the findings are cause for a discussion on presumed consent.
PEI, as well as the other Atlantic provinces, "is in the preliminary stages of looking at that," says Dr. Richard Wedge, executive director of medical affairs for Health PEI. "We haven't got any concrete plans at this point to do anything like this. … The people who work on different policies within organ donation and transplantation programs have been discussing this, along with an inter-provincial initiative that's under way to try to improve organ donation in Canada."
CBS and the various provincial agencies responsible for organ donation and transplantation have been discussing approaches to improving organ donation rates in Canada for 20 years, says Shemie. Over the past five years, national public opinion surveys have been evenly split between those who support and oppose presumed consent, he says, adding that if popular opinion is shifting in favour of such a program in a particular region, then it's appropriate for that province to discuss that option.
As part of its new national strategic plan, CBS will advocate for more investment in front-line donation and transplant services, improved training and support for hospital personnel in all departments, and better education for the Canadian public, before considering a controversial approach such as presumed consent, Shemie says. "The conclusion certainly from a national perspective is — not now. Maybe later, but not now. But we would welcome provinces taking the lead. This is the way innovation in health care and health policy occurs. One place tries it and it demonstrates to the rest of the country how controversial it is, what the problems with it are, and what the successes are."
Reaction to presumed consent in Ontario was mixed in the findings of a 2007 survey, says Ronnie Gavsie, president and chief executive officer of the Trillium Gift of Life Network. "It is clear people feel organ donation is a gift — a step that is positive and taken proactively, rather than it being a reactive assumption that someone would be a donor."
Ontario is not prepared to become the province that steps out to test the presumed consent waters, because most residents believe people should register their consent to be donors at beadonor.ca and have the discussion with their families, Gavsie adds.
Countries that have presumed consent policies in place, such as Spain, have "told us categorically that they do not believe their donation rates are a reflection of presumed consent," she says. Gavsie also notes that presumed consent did not increase donation rates in Singapore and that even when such approaches are in place, family consent is typically required and people often deny permission because they do not believe their loved one made an informed decision.
"So there's simply no evidence that we have, even when we look internationally, that presumed consent is the silver bullet," Gavsie says.
According to CBS, Canada's donation rate in 2010 was 13.9 deceased organ donations per million population, a rate which lagged well behind that of the United Kingdom (15.5), the United States (26.1) and Spain (32.1). There were 2153 organ transplants in Canada in 2010, including 1234 kidneys, 443 livers, 167 hearts and 178 lungs, according to the Canadian Organ Replacement Register. There were 4529 Canadians on the waiting lists, 511 people who withdrew their names from a waiting list and 247 people who died while on a list.
Although the United Kingdom recently rejected the presumed consent model as a way of increasing organ donation rates in England, Wales is looking at the option "very seriously," says Shemie.