7 May 2021

'Eternally grateful': Discussion encouraged about new organ donation laws

| Dominic Giannini
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Holly Northam

DFA ACT representative Holly Northam says it is important to discuss organ donation to make an informed decision. Photo: Dominic Giannini.

A cornea donation changed the life of Catherine Scott, who began losing her sight as a teenager.

Ms Scott calls it a gift of sight, but for others she has spoken to, donations have been the gift of life.

As the president of Gift of Life, Ms Scott has encouraged Canberrans to discuss organ and tissue donation in light of the new legislation allowing families to have their loved one’s donation recognised on their death certificates.

“For the families, it is a huge decision to make, but it makes a huge difference to the lives of people like me,” she said.

“I am a corneal donation recipient and, as you can imagine, that has changed my whole life completely. I have had a full, normal life because of the generosity of the families that made that decision.

“I am eternally grateful.”

Families of organ donors in the ACT can now have their loved one’s donation acknowledged on the donor’s death certificate with the words, “The deceased gave a gift of life, generously donating organs/tissue”.

They can also request a letter from the Chief Minister recognising the deceased person’s donation.

READ ALSO Organ donations can now be recognised on ACT death certificates

Donor Families Australia (DFA) is also using this week’s change to ACT law to encourage Canberrans to talk about organ donation and have a discussion with their families, who need to tick off on the donation after their loved one dies.

DFA ACT representative and Assistant Professor in Critical Care Nursing at the University of Canberra, Holly Northam, said it is important for people to have this discussion with their families as those who are suitable to donate organs often die unexpectedly.

This puts a burden on families to handle a torrent of information after the sudden death of a loved one, she said.

“Concerns that donor families have from my research is that donor families do not have enough information to inform their decision,” she said.

“They are required to take on all this difficult information about what the process of organ and tissue donation is, right at the point in time where they have got so much else in their mind. They are expected to make a cogent decision and give informed consent.

“They feel it is not reasonable.”

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Professor Northam, who is also a donation and transplantation ethics adviser, said there was a tendency for families to “disappear into the darkness” after the donation. The new measure will allow families to see that their decision is valued by society.

“It is those moments of bringing meaning to a person’s life that is so important in our world,” she said.

“We see it in war memorials and in all sorts of settings where there has been trauma and sadness. This is about giving back to society and saying ‘this has happened, and we acknowledge you and respect you’.

“If they can see that there is potential for other people to recognise and honour their relative by giving them proof that they donated, that is a really powerful symbol from society to say this is important.”

Ms Scott stressed the difference a donation can make to the recipients’ quality of life and how grateful recipients are for the rest of their lives.

Having the discussion before tragedy takes the stress away from families dealing with the tragedy as they already know the wishes of their loved ones, she said.

For more information, or to register as an organ donor, visit Donate Life.

To apply for an updated death certificate or a letter from the Chief Minister, visit Access Canberra. To be eligible for an acknowledgment, the donor must have died in the ACT.

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Stephen Saunders7:42 am 08 May 21

I’ve been on the Donor Register for many years, and I don’t think my family objects, still in practical terms, I have little confidence my wishes will be respected.

Australia’s donation rates are among the lowest in the OECD, and it’s way past time that a donor election was a lock-in, if donees can be found. The present system is clearly designed to fail, and nobody seems to care that much. But this is one time in our lives when we could all try to be generous, at no cost to ourselves.

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