When family vetoes your organ-donation wishes

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When she sees "organ donation: pending" on the emergency operating-room schedule, Dr. Jennifer Bender, an anesthesiologist at St. Joseph's Health Centre in Toronto, knows a transplant might soon be in the works. "Pending" means a potential donor is being evaluated for their suitability, a process that involves checking to see if they've registered as donors with Trillium Gift of Life Network, running a number of tests to find out whether their organs are suitable, determining if they are a match with patients on the transplant list, and then – and this may come as a surprise to many – getting the okay from family members to honour the deceased's intent to donate.

Even if every hurdle is cleared, the process is sometimes halted when a family member overrides a patient's wishes, regardless of suitability.

"I've personally seen it happen where everything is good – they've got matches, everything they need, the organs are good, the [operating room] is ready and then the conversation with the family does not go favourably and the family refuses and the whole thing gets called off," Bender says. "There is a bit of a sense of waste. To take that little bit of hope and then just turn it all off, and see it wash away, is a bit sad."

It's an all too frequent reality that medical authorities would love to see changed. In Ontario alone, as many as 10 per cent of families refuse to transplant a registered donor's organs, says Danielle Milley, a spokeswoman with Trillium.

Without regulations prohibiting families from stepping in and halting the organ-donation process, all health authorities can do is watch helplessly as another person's chance at life might be abruptly ended. It's not a uniquely Canadian problem.

"No one in the world moves forward without the consent of the family," says Dr. Andrew Healey, regional donation medical lead at Trillium Gift of Life Network, who says that even in countries such as Spain, which has presumed consent regarding organ donors, families can still challenge the decisions of loved ones. "People are often surprised that families have the right to say yes or no to this."

And families are often so blindsided by their loved one's death, it's next to impossible for them to make decisions.

"It's difficult for families – especially if they don't know the patient's last wishes," says Dr. Rob Cirone, medical director, intensive-care medicine at St. Joseph's. "They are now asked to try to conjecture what this patient would want under those circumstances."

That uncertainty has led family members to turn against each other, says Dr. Louis Hugo Francescutti, president of the Canadian Medical Association. "It brings out the best in families. But it can bring out the worst in families. It becomes a power/control thing."

For families who do go ahead, the difficult choice can "ultimately make things easier," says Ronnie Gavsie, president and CEO of Trillium. "They actually will tell us after the fact that the sorrow was softened."

The irony is that most Canadians – some 90 per cent – support organ and tissue donation, yet a mere 24 per cent have signed up to be donors, according to the Canadian Transplant Society. In Ontario, that means 2.84 million people out of an eligible 11.74 million have registered at beadonor.ca, Ontario's donor registry. Each province has its own donor registration database.

Signing a donor card isn't enough: "Many people who signed donor cards think they're registered but they're not," Gavsie said.

And the fewer registrants, the fewer the number of families who consent to transplantation. "At least 90 per cent of families will agree to donation when shown loved ones did register," Gavsie said. "In the absence of consent, those numbers go down dramatically."

According to a 2012 report from the Canadian Institute for Health Information, 4,612 Canadians were awaiting transplant; meanwhile, deceased donor rates have languished since 2006.

Gavsie says that despite continued interest among medical professionals in making consent irrevocable, there's no impetus toward making this happen.

"It's something we'd want to take a look at," says Dr. Scott Wooder, president of the Ontario Medical Association, which is in the midst of a campaign focusing on honouring end-of-life wishes. "We just don't have a policy in place. We know there are thousands of physicians across the province who view this as high priority."

In the meantime, says Cirone, people should share their views on transplantation with as many family members as possible – as soon as possible – to avoid confusion. "Have a discussion with your family about what you would like your death to be like," he says.

But what if you think family dynamics will prevent your wishes from being followed? Appoint someone to serve as an unofficial advocate, suggests Francescutti. That move is strengthened if you get a lawyer to certify a form selecting that person to make end-of-life decisions for you, and alerting your physician and family to this. You could also fill out an end-of-life directive – a witnessed form that stipulates what you want done with your organs after death. Or make a videotape to voice your end-of-life plan.

"As uncomfortable as it feels, it's far easier to have that conversation now," he says.

Special to The Globe and Mail