Organ transplantation relies on the generosity of a person to volunteer their organs for donation after death, or the generosity of the family to gift or donate the organs of their deceased relative.
But last year, the organs of just 510 deceased donors were transplanted into Australian recipients. This amounts to 20.7 donations per million people and puts Australia down to 17th place for international deceased organ donation.
Last week, a parliamentary committee report on organ donation and trafficking made a number of recommendations for the Australian government, including investigating whether an opt-out system of organ donation could help increase donation rates.
Several countries have recently made the switch from opt-in to opt-out systems. But this hasn’t necessarily increased organ donation rates. One reason is if someone hasn’t actively opted in, their family members will still need to consent to their organs being removed. And where families don’t consent, the donation doesn’t proceed.
Opt-in vs opt-out
In Australia, a person must register to donate their organs or tissues. This is sometimes referred to as an opt-in system of organ donation.
While 69% of Australians believe organ donation is important, only one in three people are registered as organ donors.
In an opt-out system, a person is automatically presumed to have given their consent to be a donor before their death unless they had made a specific request not to donate their organs. So, organs may be taken unless people have registered an objection not to be donor, or their family members (next of kin) object. This is known as a “soft opt-out”.
In 2017, France introduced a law that requires doctors to only inform the relatives about which organs are to be procured, and not ask their permission to procure. This is an example of a “hard opt-out” system.
We believe the consent of the family members (next of kin) should always be sought if a person has not registered their consent before death for their organ to be procured.
Historically, Australian governments have been wary of adopting an opt-out system of organ donation.
Despite several states considering reforming the current organ donation system and a 2016 independent review looking at options to boost donation rates, an opt-out system was not considered preferable. We suspect this was because people tend to react negatively when their choice is taken away.
There is no conclusive evidence opt-out systems of organ donation increase the number of donors available.
An opt-out system is unlikely to increase donation rates without the consent of the family.
In our society, the family have always been responsible for decisions about a burial or cremation of the body of their relative. Arbitrarily violating this right would cause psychological harm and no direct benefit.
You only have to consider the anger and grief of parents in the scandal that broke out in 1999 around the non-consensual harvesting of their children’s organs at a UK hospital. It shows how devastating un-consented procurement of organs of a deceased relative would be.
There are other reasons why non-consensual organ procurement would cut across social expectations. Autopsies are now not performed routinely and if conducted are not without the consent of relatives. This further adds to the notion relatives have decision-making rights.
Are we to have an opt-out system which includes all citizens? Who would dare tell parents their dead child’s organs are to be compulsorily procured? Who would ignore the practices of certain religions which expect the deceased body to be buried intact? These are all insurmountable obstructions to hard opt-out systems.
There is significant variability in how opt-out systems work. Take Spain, for example. It introduced an opt-out system, often referred to as a presumed consent model, in 1979 and it took almost a decade before donation rates increased. Even when they did, Spain’s success was due largely to close consultation with family members, which continues today.
Brazil also introduced a presumed consent system of organ donation but abolished it after a year and a half, in late 1998. This was due to uncertainty, fear and mistrust of the medical profession prematurely declaring people dead to remove organs.
And even under the presumed consent system, the majority of doctors would only remove organs from the deceased after receiving consent from family members.
Gift of life
Opt-out systems of organ donation go against the very concept of gifting or donating. It’s taking organs without consent, as opposed to donation. It presumes consent by the deceased when none exists.
As a society, we need to normalise organ donation and dispel the fears, myths and perhaps sheer ambivalence that surrounds it.
We need to encourage innovative education programs and engagement with individuals and families to promote robust, honest and meaningful conversations about organ donation.
It may be difficult to have conversations about organ donation with families after a tragic accident or a sudden death. But, where possible, doctors should engage families in discussions about organ donation early on.
Family members should be encouraged to respect the wishes of the deceased, whether that was via the organ donation register, a prior conversation, or by any other means.
It’s unlikely there will be an adequate supply of organs to meet the demand anytime soon in Australia. There is no simple solution or quick fix to increase organ donation rates, but an opt-out system is not the answer.
Organ donation should continue to be just that – a donation. Based on the generosity and free will of the donor by virtue of a gift, and not based on a default system of taking without consent.