Australia has one of the lowest deceased organ donor rates in the developed world, with only 13.8 donors per million population. Karen Tong asks why Australians aren’t so giving when it comes to organ donation
Barry Saleh, 53, had to wait six years for his transplant. His doctor had told him that there was a one in four chance that he would get a kidney. Saleh never expected to get one, and resigned himself to a lifetime on dialysis.
He started doing dialysis three times a week for six hours each time and after suffering a heart attack, this increased to four times a week.
“I remember my first niece was getting married in Adelaide,” Saleh says. “She was getting married on the Sunday so I did dialysis Friday night, caught the plane Saturday and went to her wedding… so I stayed two days without dialysis, came back on a late flight on Monday and had to go straight back onto a machine.”
At 47, his wife Mona Saleh says, “I’m always worrying about him, his dialysis, taking him to the doctor, no time for me, no friends, and no nothing.”
Australia has one of the lowest deceased organ donor rates in the developed world, with only 13.8 donors per million population.
This figure shows Australia trailing behind countries like Spain, which has a donor rate of 34.3 donors per million population, and the United States, which has a donor rate of 26.6 donors per million population.
Kirsten Howard, Associate Professor at Sydney University’s School of Public Heath says, “Overwhelmingly people are very much in favor of organ donation but for some reason that doesn’t translate into higher donation rates.”
In a country that never fails to give generously when there is a need, as demonstrated by the millions of dollars donated by countless Australians to the Queensland flood appeal, it begs the question – why are our donor rates so low?
Anne Cahill Lambert, member of the Advisory Council of the Australian Organ and Tissue Donation and Transplant Authority says, “The only reason we haven’t had a huge rise up until now is because honestly we haven’t thought about it.”
“We are a country that says ‘she’ll be right mate’ and we don’t talk about death and dying.”
However, with more than 1,700 Australians on organ transplant waiting lists, there is an enormous disparity between the need for organs and the number of organs that are available for transplant.
The government’s organ and tissue donation body, DonateLife, is spearheading a new campaign, ‘Know their wishes, OK?’, with billboards and television advertisements asking people to talk about organ donation and knowing the wishes of their family members relating to organ and tissue donation after death.
“To be an organ donor you actually have to die in an intensive care unit, and about only two per cent can be considered for organ donation. So with a high family refusal rate, we have a low organ donation rate,” Ellie McCann, DonateLife NSW State Nurse Manager says.
“That’s a very stressful time in people’s lives, a very emotional time and again we come back to the fact that if people know each other’s wishes then that decision to be an organ donor is so much easier to make at that difficult time.”
In her research on community perspectives of organ donation, Associate Professor Howard believes that the majority of people expressed disbelief that their families would make this decision and says, “There was a strong feeling that if you had actually made a decision to be a donor, that your family or next of kin should not be able to overrule that.
“If there was some way that the donation decision was actually legally binding, then that would presumably speed up the process.”
But it seems an unlikely path to follow as doctors would not want argue with a family over a deceased loved one. “It’s just not worth the grief, frankly, I don’t think we’d get away with that,” says Lambert from the Advisory Council of the Australian Organ and Tissue Donation and Transplant Authority.
To become a donor in Australia, you can sign up on Australian Organ Donor Register and tick an organ donation box on your driver’s license. In countries with high organ donor rates like Spain, an opt-out system, where everyone is an organ donor by default unless you choose to ‘opt-out’, has been credited for boosting deceased organ donor rates.
“The opt-out system is one potential way of going down that path of increasing donation rates, and I think it’s something that probably could work,” Associate Professor Howard says. “But think it’s something we need better information on about what the community would actually think about that process.”
In 2008, the Queensland government considered the opt-out system. In 2010, West Australian MPs from the three major parties, Liberal, National and Labor, introduced a bi-partisan Bill to consider an opt-out system. This year, a parliamentary committee in Victoria will look at the opt-out system and the Tasmanian Greens have tabled this system for investigation. The New South Wales government has yet to comment on this issue, however, in 2006, Premier Barry O’Farrell, then Deputy Leader of the Opposition, supported the opt-out system in parliamentary statement, “I personally believe the system needs to be adopted.”
On a positive note, Australian donor rates have improved from 9 donors per million population in 2007 by 25 per cent. DonateLife State Nurse McCann claims this is largely due to a new national reform package, A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation, which was announced in 2008 and implemented in 2010.
“Along with increasing community support and education, along with hospital support and education, we have seen an increase in organ donation in 2010 by 25 per cent,” McCann says. “So we encourage Australians to discover the facts about organ donation and decide about organ donation and to let your family and friends know what your decision is.”
With each organ donor having the potential to save lives and significantly improve the quality of life for dozens more, it’s something worth talking about.
He recalls the day that a phone call changed his life.
Saleh had planned to go to the cinema to watch the film Combination, but it had been cancelled.
“If I was at the movies, I would’ve had my phone off,” Saleh says.
Instead, he went to his brother’s house with his wife and answered a phone call from his doctor telling him that there was a kidney waiting for him in hospital.
“I told my dad that I had to go to hospital and he freaked out, then I told him it was because I got a kidney, and he was happy,” Saleh says.
Saleh has now had his kidney transplant for two years and the couple’s lives have been transformed. Saleh’s wife was even able to take a short trip back home to Lebanon to visit family. “Before she wouldn’t be able to do that, she’d always be by my side,” Saleh says. “She needed that break after all she’s been through.”
The couple have also being able to go out more and do things together. “What else do you want to do together?” Saleh jokes with his wife, “Stay married?”
“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You