Successful organ donation is rare – and family consent is key. Photo: Supplied.
So you’re among the 28 per cent of eligible Canberrans registered on the Australian Organ Donor Register – what now?
Experts say most Australians have only a vague understanding of the organ donation journey.
DonateLife ACT agency manager Nadia Burkolter has first-hand knowledge of the process, which begins with signing up on the Australian Organ Donor Register and unfolds only after death – and only under specific circumstances.
“It’s a terrible myth that if you’re a registered organ donor, medical staff won’t fight as hard to keep you alive,” she says.
“That is categorically untrue. Nobody even looks at a person’s wishes until there’s a medical consensus that that person has reached the end of their life.”
In fact, organ donors must die in extremely rare circumstances, and always in the hospital – never at home or at the scene of a road accident. They must be critically unwell or injured with the correct supports in place to maintain a blood pressure that keeps their organs viable and safe for transplantation.
The only exception in the ACT is eye tissue donation, whereby those who have died at home or in palliative care can still give the gift of sight to two individuals. Even those who die of cancer may be able to become eye tissue donors.
Otherwise, only about two per cent of hospital patients might be eligible to donate organs of any kind.
Another misconception is that age or certain illnesses or conditions disqualify potential donors.
“A lot of people think they’re too old or tell us ‘You wouldn’t want my lungs, I’m an asthmatic or a smoker’ or ‘I’m diabetic, you wouldn’t want my kidneys’. As I say to them, the people waiting on transplant lists are so much sicker,” Nadia says.
“As for age, we’ve had eye tissue donors who’ve died in their 90s and restored sight to Australians – an amazing legacy to leave behind.
“Let the experts decide on the day – don’t rule yourself out.”
Circumstances of death aside, talking to loved ones matters just as much as registering.
Australia has an “opt-in” system, meaning you can register your donation decision on the Australian Organ Donor Register. However, even if you’ve registered, your family will still be consulted before donation can proceed. Family will ultimately make the final decision.
“That’s why it’s so important to have the conversation. When families are certain about their loved one’s wishes, they almost always say yes,” Nadia says.
Sixty per cent of families say yes to donation if the matter’s already been discussed, even when they are not registered. That number drops to 40 per cent when the deceased loved one is not registered and not made their wishes known.
DonateLife is on call 24/7 to bring life-saving news to someone desperately awaiting a transplant. It’s only then DonateLife looks into a potential donor’s medical suitability and checks their status on the register before approaching the family.
“I was a donor coordinator for many years and can say without hesitation that when families are left with no doubt as to what their loved one, who can no longer advocate for themselves, wanted, it’s an absolute kindness,” Nadia says.
“Nobody wants to have to make that major decision, let alone at a crisis point.”
Organ donation is a highly specialised operation. With no transplant units in the ACT, specialists fly in from interstate for retrieval.
The donor’s body is treated with the utmost respect and dignity during the process. Great care is taken to ensure the body is ready for a family to view if it wishes.
“They’re carefully sutured, the same as after any other surgical procedure. We then wash them, brush their hair and teeth and some families like to provide specific clothing for them to wear at the viewing,” Nadia says.
Donation surgery generally occurs within 24 to 48 hours of gaining consent. Nadia says for many families, it’s the one ray of light in otherwise tragic circumstances.
One organ donor can save up to seven lives and transform many more through tissue donation.
“A lot of families tell us they drew comfort from the knowledge their loved one has helped others,” she says.
“It’s extremely difficult to walk into a room full of grief-stricken family members and ask them to consider donation when they’ve already lost so much. If they know their loved one wanted to be a donor, it makes it so much easier.
“It is such a privilege to be a part of this process. I truly believe donors and their families represent the best of our community.”
Families of organ donors in the ACT receive follow-up care including check-in calls from a clinical psychologist and invitations to the annual remembrance service.
They are also given de-identified information on the progress of their loved one’s transplant recipients and, on occasion, anonymous correspondence from recipients.
DonateLife Week runs Sunday 27 July to Sunday 3 August – the ideal time to sit down with loved ones and talk about what most aren’t discussing. Contact DonateLife for more information.
