Organ donation consent rates would be better if there were more education about it, advocate says

Leslie Schultz spent years watching birds flit past his window.

But without their song in his ears, the scent of eucalypts in his nostrils nor the glorious outback sun on his back, the sight only made him homesick for the bush.

For the Ngadju elder, spending hour after hour, day after day, shut inside was one of the worst things about kidney failure.

“I love the bush,” he said. 

“But the dialysis can’t be done outdoors.”

Not only did it take him away from his favourite places, it stopped him doing his favourite things.

Sometimes it felt his entire life revolved around sitting in a chair, waiting for toxins to be flushed from his blood.

That was until the kindness of a stranger and their family gave him back his freedom.

A need for donors

According to a recent inquiry, Australia’s organ donation and transplantation rates are among the lowest in the developed world, and only 36 per cent of eligible adults are on the organ donation register.

In 2022, 34 people died while on the waiting list for an organ.

Indigenous West Australians are among those most impacted by the shortfall.

The community experiences chronic kidney disease at almost seven times the rate of the wider population — the biggest disparity of all Australian jurisdictions — yet, for a range of complex reasons, are far less likely to ever have the life-saving procedure.

Mr Schultz believed part of the problem was poor health outcomes and high death rates among Indigenous Australians had led to a mistrust of the system. 

He said many were hesitant to donate organs, or even receive treatment. 

“Some have made their mind up not to do kidney dialysis, let alone transplant,” he said.

He shared his story in the hope of making others feel more open to the process. 

‘Like a birthday’

The call came just after midnight.

“[They said] ‘Les, we’ve got a kidney available for you,” he recounted.

“Can you be at the hospital at 9 o’clock in the morning?'”

With none of his family and friends answering their phones at that time of night, Mr Schultz said he hopped in the car and drove the eight hours from his home in Norseman, in Western Australia’s Goldfields, to Perth’s Fiona Stanley Hospital, arriving with 30 minutes to spare.

Less than 12 hours later, it was done.

He smiles remembering his relief, waking from the five-hour procedure.

But the clock was still ticking — with a doctor announcing he would soon have to produce urine, or he may go under the knife a second time.

“I thought, ‘Oh no, I better start producing urine’,” he said.

When he did, it was “like a birthday”.

After recovering from the operation he travelled the world — from Dubai to Egypt to New York — discussing climate change, as well as spending long chunks of time with his feet on red dirt. 

“It’s changed my life, totally,” he said.

He often reflects on the selfless act that made his new lease on life possible. 

“My [kidney] was from a deceased donor,” he said.

“I just thank the family that allowed me to have that break in life.

‘No-one was talking about this’

Rowena Alexander has lived the other side of the organ donation story.

When her 20-year-old daughter died suddenly, she and her partner made the heart-wrenching decision to donate her organs — saving three people’s lives.

But it weighed on her.

She thought one small step could have saved them a lot of heartache — asking people their thoughts on organ donation when signing up for their driver’s licence. 

“My daughter had her licence,” she said. 

“If she were able to register [for organ donation] using that system, that would have meant that her father and I knew her decision, and it would have made our decision a lot easier.”

The WA government is considering bringing back the measure, after it was stopped 20 years ago, following an inquiry about organ and tissue donation.

In South Australia, the only jurisdiction that uses this system, donation rates are almost twice as high.

Call for education campaign

“[Organ donation] is a taboo topic. It involves talking about death. And First Nations communities don’t often do that,” Ms Alexander said.

She believes this is part of the reason rates of organ donation consent — which must be given by a potential donor’s family before donation can proceed — are low among Indigenous people, and thinks targeted communications campaigns should be funded to promote understanding about the topic. 

A spokesperson for WA Health Minister Amber-Jade Sanderson said the government recognised there was a need to further investigate organ and tissue donation awareness among First Nations people.

“And [the government] will continue to advocate to the Commonwealth for further grants for tailored organ and tissue donation education,” the spokesperson said.

“But will consult with elders and Aboriginal Community Controlled Organisations first.”

Mr Schultz said it should be a priority.

“[The messaging needs to include] all the pillars of culture, of heritage, of everything that we speak about daily in our lives, kinship, ceremony,” he said.

“You can’t get that from a clinical approach.”

He believes sharing the stories of Indigenous people with lived experience will help.

‘There is a bright side’

A few days after his kidney transplant, Mr Schultz found himself staring out a hospital window once again.

But instead of birdlife, he spotted a rainbow.

A sign of hope.

He snapped a picture to share with friends on social media.

“There is a bright side on the other side of dialysis and kidney transplant,” he said. 

“Just don’t give up.