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Health
Rosemary Bolger and Kylie Grey for Compass

Inside Australia's secretive and life-saving organ donation and retrieval program

John says his last goodbye to best friend Keith before organ retrieval surgery. (Compass: Kylie Grey)

In the intensive care unit at Sydney's Royal North Shore Hospital, John is spending his precious last few moments with Keith.

"This is unfortunately the end of the road," he tells his best friend as he holds his hand. "I've told the staff that I'll stay until the very end."

Keith is on life support and as his legal guardian John has made a difficult decision.

"I decided that my friend would probably like me to offer the unit here … [permission] to harvest his body of any organs that were healthy and give them to someone who needed them.

"You know, he wanted to die as a giver, which is the way he was when he was alive."

Hospital staff form a guard of honour as Keith is wheeled into theatre. John follows until he can go no further.

"He is the closest friend I've ever had, and ever will."

"I'm going to miss you so much," John tells Keith. (Compass: Kylie Grey)

The end of Keith's life is the beginning of a high-stakes medical and logistics effort that will save up to seven lives and improve the quality of life of several more.

Desperate for more donors, DonateLife has granted the ABC's Compass program rare access to this highly secretive program.

From discussion to surgery

It's the job of donation specialist nurses Jenny Holman and Alyce Robinson to broach the subject of organ donation with a family on one of the worst days of their lives.

"We don't talk to people about organ donation until we make sure that they understand that their loved one is not going to survive, or has actually died, and they're brain dead on the ventilator," Ms Holman says.

Jenny Holman says age is no barrier to donating organs.  (Compass: Kylie Grey)

Some families of elderly patients or those with previous medical issues are surprised their loved ones' organs are fit for donation.

The oldest patient Ms Holman has looked after was an 87-year-old former athlete whose liver and kidneys were able to be donated.

"I think that's incredible, so I think that's a big myth, that age is a barrier," she says.

Ms Robinson says they're often asked how the body will look after surgery.

"And I really want to reassure them that in my experience as a DSN [donation specialist nurse], it is the most dignified and respected operation that I've ever been in," she says.

Alyce Robinson prepares to take Keith into organ retrieval surgery. (Compass: Kylie Grey)

The life-changing call

Once a family makes the decision, the rest of the DonateLife team swings into action. Tests need to be done and matches are found.

Specialist surgeons carry out the retrieval operation. Recipients are prepped as their new organs are put on ice and transported, sometimes with police escorts, to them.

About 1,800 people are on the transplant waiting list.

Two years ago, Sam McGrath got the call to say lungs had been found for her then seven-year-old son Cooper.

"I think we really thought this call would never come," she says.

Cooper, with mum Sam McGrath, heading into surgery to receive his new lungs.  (Supplied: Sam McGrath)

Before surgery, Cooper was struggling to breathe due to a rare genetic condition and severe pulmonary hypertension.

Now he runs freely around the backyard with dog Reg.

Ms McGrath is mindful of what it took to make that happen.

"The whole time I was very aware that somebody else's child had died for my child to live," she says.

Low rates of donation

DonateLife medical director Michael O'Leary says surveys show support for organ donation sits between 70 and 80 per cent among the Australian public.

But far fewer families choose to donate when the time comes.

Families have the right to veto even when someone is a registered organ donor.

"It makes me very, very sad when I see cases where family have blocked the wishes of their loved one," Dr O'Leary told ABC Radio Sydney.

Organ donation rates dropped during the pandemic and debate continues about whether an opt-out system is needed to reverse the trend.

Dr O'Leary doesn't believe Australia is ready for that, saying the most important thing is to discuss your wishes with relatives before it is too late.

"You need to register and talk, you need to make sure that the family are aware, because it's such a stressful moment when this conversation is being had with the family," he says.

Transplant NSW wants the option to become an organ donor linked to getting a driver's licence again.

DonateLife's Danielle Fisher and Michael O'Leary are concerned donation rates have dropped since 2018. (Compass: Kylie Grey)

In South Australia, the only state to retain the option with the driver's licence, the number of registered donors is 73 per cent, double the average rate in other states.

Transplant NSW CEO Chris Thomas said people often thought about their legacy in terms of wanting to create wealth for their children or have a football field named in their honour.

"I would think that giving other people life, maybe seven other people to receive the gift of life through organ donation, I'd probably suggest that is far more important than many of those material things that we like to leave behind."

Lottery of Life airs on Compass at 6:30pm Sunday, April 30 on ABC TV or anytime on ABC iview.

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