Opt-out not the answer for organ donation

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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.

Lungs diagramIn 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 ParsonsSandi 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.

Topic tags: Sandi Parsons, organ donation

 

 

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Existing comments

The bequests in my will of what is mine are for me to decide, not my next-of-kin. Nothing is more my own than my body. My next-of-kin should have no say whatever on this. If they are mean-spirited enough, they may , when it is their turn, refuse to save a life by refusing to donate their own dead body. They have no right over mine.
Thomas Mautner | 22 March 2019


Thank you Sandi for raising this subject and sharing your story. I have an organ donor card in my wallet and I’ve encouraged people I know to have one and talk to their families. I’ve discussed my wishes with my wife and children, so they know what I want. That is now, when we are all very rational and logical about it. When the time comes, I am confident my loved ones will respect my wishes but it will be a highly emotional time for them in making that decision while they are grieving. They will need support and comfort and love too. I’m currently in good health for a senior but as in life, we don’t know the circumstances of our departure. My family knows I don’t want to continue if I am on life support with no meaningful chance of a quality life. I’ve told them there is a time to let go, but they face the hard call to make that decision and I don’t envy them at all.
Brett | 23 March 2019


I spent 42 years transplanting kidneys from the very early days practising on the deceased in the morgue and on live dogs in the laboratory (all of which I hated). Fortunately, I never once had to seek consent from a bereaved relative to offer the organs of their deceased loved one for a transplant. The ethics of the time went something along the line that the transplant surgeon was committed to saving the living rather than prolongation of the life of an unfortunate potential donor on life support and faced a potential conflict of interest. Fortunately I was the beneficiary of a Jesuit mentor (Tom Johnson SJ) when I struggled with the ethics of transplanting who said to me "If there is one life that cannot be saved, save one little piece , eg a kidney, in order to save the life of another". It kept me straight! I agree that the opt out system is not the way. There are too many who might miss out on life salvage if all are automatically designated as donors when dangerously ill - and for no reason other than the goals of the transplanters.
john frawley | 24 March 2019


Good article Sandi. I think under an opt-out system all the awareness activities would need to remain, but the focus would not be so much on registration. The numbers above suggest that if the overall consent rate is 59%, over half the population neither know their loved one's wishes nor have not registered yet. I think the opt-out system is aimed at making it easier for those families to give consent if the circumstances arise thereby raising the donation rate there from the 44% more towards the 73%. It is a great unknown and probably just a governmental policy decision.
Paul Anthony Turner | 28 March 2019


I realise there is a mistake in my comment of 28 March. On the third line, could you please change "nor have not registered yet" to "or there is no registration for the loved one" Thank you, Paul
Paul Anthony Turner | 29 March 2019


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