By Jessica Lovell
Janet Parr is on call, but she’s not a doctor; she’s a patient.
Parr, who is on leave from her job as a vice-principal at John McCrae school, carries a beeper with her at all times. It’s clipped onto the bag that carries the machine that pumps her blood because her heart is not doing the job anymore.
“I live a fairly healthy life. It’s not as though I’m in the hospital,” says Parr. But she credits her relatively normal lifestyle to her LVAD or left ventricular assistive device, which does the work her heart can’t and keeps her out of hospital.
Parr suffers from cardiomyopathy, a disease of the heart muscle, and for the past two and a half years she has been waiting for that beeper to go off to let her know that the heart transplant she’s been waiting for might finally happen.
News that Guelph General Hospital has just become a designated hospital for routine notification of all deaths to the Trillium Gift of Life Network gives her extra reason to hope that the call may come that little bit sooner.
Right now, there are about 1,500 people on the waiting list for organ donations in Ontario.
“Every three days, one of these people on the list dies,” says Parr. “This just give the potential for more lives to be saved.”
The designation means that every death that happens in the hospital, or every time death is imminent, it gets reported to the Trillium Gift of Life Network – the organization created by the Ontario government to oversee organ and tissue donation in the province.
The designation is not a huge change for the hospital, says Critical Care Unit director Stephanie Pearsall. “We had historically reported those that we thought were eligible for organ donation,” but now “we report all deaths,” she says.
It removes the possibility that hospital staff may operate on assumptions, and allows Trillium to take over and do the job its people are specially trained for, she explains.
Trillium connects to Ontario’s online organ donor registration network, and can log into the registry right away to see if a person has consented to donate. Trillium’s people have specific training in how to have that difficult conversation with the person’s family.
This is particularly important, says Parr, pointing out that a patient’s consent isn’t legally binding. “It’s still very much up to the family to decide,” says Parr.
Parr became a member of the Life Donation Awareness Association to help raise awareness about the importance not just of being a registered organ donor, but also of having a conversation with your family about your wishes.
“The most important thing is trying to have that discussion with your family ahead of time, so they’re aware of your wishes,” she says.
Registering online at beadonor.ca is a way to create a record of your wishes, beyond the old organ donor card, which may not be handy when the time comes to make a decision, Parr says.
The online registry is connected to a person’s health card and allows donors to be specific about which organs or tissue they would like to donate.
But Parr asks that people try not to count themselves out of the running based on misconceptions about things like health and age. She suggests registering to donate and letting the doctors decide whether you’re a good candidate.
“The decision won’t be made to give a patient an organ that’s unhealthy,” Parr says.
Pearsall agrees. “It’s an ethical process,’ she says. “They do it to achieve the maximum amount of success that they can.”
Organ transplants are specialized surgery and are not performed in Guelph, says Pearsall. But organs and tissue are retrieved for transplant in Guelph.
“One organ donor can potentially impact eight people,” she says, adding that tissue donors can help many more people.
Guelph, which isn’t a trauma centre, also doesn’t retrieve many organs for donation, but with its new designation there is potential for more, says Pearsall.
There were 184 deaths at Guelph General last year, she says. Though most would not be expected to meet the criteria for organ donation, which requires the patient to be on life support, many could be tissue donors, she says. In the week since the hospital has had its new designation, it has already retrieved some eyes, which are considered tissue donation, from two patients, Pearsall says.
Will it improve the numbers of organ donors? “We live in hope that it will.”