Despite investing heavily in its organ donation system in recent years, the Australian government is again asking why donor numbers have failed to rise significantly.
Knowing her brother’s heart still beats inside another chest helps Shivaun Deacon deal with the grief that followed his death in a road accident five years ago.
It also makes her one of a surprisingly small group of Australians whose loved ones donate their organs after they die.
In 2010, Ms Deacon’s family were travelling to a family reunion. Still on her way from Sydney, she talked briefly on the phone to her father, who offered to put her 40-year-old brother Ivahn Leis on the line.
“I said, ‘No, I’ll just say hi when I get there,” she recalls.
A few hours later, Ivahn went for a walk and was hit by a truck. He never regained consciousness.
The family understood the urgent need for organ donations for transplant patients but it was still a difficult decision: the doctors had declared Ivahn ‘brain dead’ but he remained on a ventilator to keep his blood circulating to the organs for transplant.
“His chest was still moving, his joints were still mobile, there was no rigor mortis setting in. So, it was very hard to reconcile in my head that he was actually gone,” Ms Deacon told the BBC.
What made the experience ultimately uplifting was the care her family received from specialist hospital staff.
“They were there for my brother, first and foremost, and then for us, and the dignity and compassion they showed my brother in the end was just beautiful,” she says.
“Knowing Ivahn was an organ donor and his heart is still beating inside someone else, it gave us something to hold on to and take some comfort in.”
Organ donation basics
•Organs that can be transplanted include the heart, lungs, liver, kidneys, intestine, and pancreas
•Tissues that can be transplanted include heart valves and other heart tissue, bone, tendons, ligaments, skin and parts of the eye
Ivahn was one of about six million Australians, or 30% of the adult population, who are registered as would-be donors.
Australia has one of the highest rates of registered donors per capita in the world and is a world leader in transplant surgery. But that does not translate into a high level of actual organ donation.
In recent years, a A$250m ($194m, £122m) government investment to boost organ donation numbers has helped push the country’s world ranking to 20th place from 32nd.
But Australia is still way behind world leader Spain and momentum slipped last year, prompting the federal government to order a review.
Currently Australians can register if they want to donate organs but only about 1% of hospital deaths each year are suitable.
Announcing the review, Assistant Health Minister Fiona Nash said many families were “failing to uphold the wishes of the deceased” by not allowing donation to proceed.
Some advocates are calling for “opt out” organ registration – where adults are deemed to be consenting donors unless they formally oppose it.
Others want to follow the practice adopted in some United States jurisdictions where families cannot overrule a person’s decision to donate.
The Organ and Tissue Authority, whose performance is being questioned by the review, says the overall upward trend in donations is the key indicator of success.
It says Spain had annual fluctuations in its early days too and that getting systems right across Australia is a “10-year process of change in clinical practice”.
But ShareLife Australia, an organ donation lobby group, says the current rate is “shamefully low” and argues the system has failed both to identify all potential donors, and to support all families through the traumatic process of death and donation.
For Leanne Campbell, there was no question her family would consent to donate her son Brett’s organs, after the 22-year-old died in an accident in 2009.
But she says she felt “ambushed and confronted” by the reality at the time.
Mrs Campbell and her husband were exhausted, forgotten by staff in key moments, left with unanswered questions, and had to “tick off” which organs they were prepared to donate in the presence of their distraught teenage children.
“The process itself can be quite destroying to families,” she says.
“You’re absolutely stressed, the grief hits … and they’re telling you to enter into this contract, to make these decisions, with so little knowledge and at the worst time of your life, and they want you to be happy with it.”
Families need time, care, expertise and information, explains Assistant Professor Holly Northam, a board member of ShareLife and Donor Families Australia.
Prof. Northam says her research shows people need to “know the process, to be able to say goodbye, to know their loved one is not suffering, and to assure themselves that (his or her) needs were addressed before and after death”.
She says one of the reasons Spain leads the world is not that it has an ‘opt out’ system – in fact, families there still get the final say – but that organ donation is “normalised”.
“In every death, they talk to the family about it, even if it’s to discuss why it wouldn’t be suitable in that case, and that spreads into every aspect of the health care system,” she explains.
“We haven’t got anywhere near there yet.”
Marie McInerney is a Melbourne-based writer specialising in health issues.