In 2018 in an effort to stamp out illegal trade practices and raise organ donation rates, a parliamentary committee recommended Australia take an opt-out approach to organ donation. An opt-out system would presume everybody is an organ donor unless they have taken preventative measures and officially registered to opt-out.
In 2011 I was one of 1001 Australians who benefited from the generosity of 337 deceased organ donors. At the time, it was Australia's highest recorded number of organ donations. Last year Australia recorded 554 deceased organ donors — an increase of 64.3 per cent.
DonateLife, the peak body responsible for organ donation in Australia, maintains the position that adopting an opt-out policy has the potential to decrease donation rates. According to DonateLife, growing education and awareness have been the catalysts that have seen organ donation rates increase in Australia. So why change a system that is working?
Many in favour of adopting an opt-out system believe it will override family consent, and organ donation will become automatic for those who have not opted out via the registration system. Transplant wait lists will subsequently decrease — it seems like a win for everyone.
However, the idea that opt-out will override family consent is false. The key deciding factor for both opt-in and opt-out systems requires that next-of-kin provide consent. Without this consent, organ donation will not proceed under either model.
Of those who die in the circumstances compatible with organ donation, 59 per cent of families consent. A closer look at the statistics reveals 90 per cent of families say yes to organ donation when their loved one has registered, and 73 per cent of families say yes if they've had a conversation and know their loved one's wishes, even if they never registered.
In comparison, only 44 per cent of families consent when they do not know their loved one wishes. Without the clear indication of intent provided to next-of-kin by registering to be an organ donor, changing the organ donation register to opt-out runs a real risk that organ donation rates will lower.
"As guardian to gifted lungs, I am now responsible for taking care of a part of someone else, and I take great comfort form the knowledge that these lungs were given willingly."
Why worry about a little thing like consent then? Why not let opt-out go a little further and override next-of-kin consent? The obvious argument is that the first headline shouting 'Government stole my husband's organs' will do more damage to organ donation than the rumour-mongering and myths that already exist.
With education and awareness established as the best way to raise organ donation rates, what more can we do? The approach to families after brain or circulation death is established can be one of the critical elements — it's a conversation that happens right after the delivery of the worst possible news, the death of a loved one. It's a conversation that needs to be sensitive and broached in the best possible manner.
Nobody is better placed to help DonateLife have these conversations than those families who have already experienced this situation. Organ donation is a unique situation, only donor family members can explain the highs and lows that will come from giving the gift of life to others. The power of a positive message about the gift of organ donation delivered by a donor family member could become a key factor in helping next-of-kin make that their decision.
Australian' generosity towards charities and fundraising is evident daily. In 2018 Australia was ranked as the second most generous nation by the Charities Aid Foundation. Organ donation has always been the most altruistic gift. Organ donation should never be expected via an opt-out system, or treated as an expectation or a demand.
A double lung transplant did more than extend my life. It profoundly changed me. I am not who I was before, although I am still me. I am in the lucky position of knowing a little about the generous woman who gifted me the use of her lungs. I know that many years before her death she chose to become an organ donor and when faced with the decision of consent, her family chose to honour her wishes.
As guardian to gifted lungs, I am now responsible for taking care of a part of someone else, and I take great comfort form the knowledge that these lungs were given willingly. I can't repay the woman who saved my life, but I can pay her gift forward by raising awareness of the positive aspects of organ donation and speaking up when the conversation on organ donation gets off track.
Sandi Parsons lives and breathes stories, as a reader, writer and storyteller. Having spent 18 years working in educational libraries, she is passionate about diversity in storytelling and engaging readers with stories. Sandi considers her guardianship of gifted lungs one of her many victories in her on-going battle with Cystic Fibrosis.