Organ and Tissue Authority

National Donor Family Study Wave 4

Article Date: 

Thursday, November 12, 2020

Study shows prior conversation is key to organ donation decision

A research report released today highlighted that the majority of families who knew their loved one wanted to be an organ or tissue donor when they died, made it easier for them to say “yes” to donation (93 per cent).

Wave 4 of our National Donor Family Study, which collects feedback from families on their experience with the organ and tissue donation process in Australia, involves families who experienced the organ and tissue donation process in 2016 and 2017, with 429 family members choosing to participate.

The study provides valued insights from families on their donation experience including early conversations with donation staff about organ and tissue donation through to the follow up support provided by DonateLife. It is also a valuable resource for donation specialists and intensive care staff in hospitals around the country.

Our DonateLife specialists speak to families during one of the most difficult moments of their lives. The study gives us direct feedback from families, both good and bad, to shape the program and identify areas for improvement so that we can continue to deliver a world-leading donation program.

Of the donor families surveyed, the majority of family members who consented to donation felt that initial discussions about donation were handled sensitively and with compassion (97 per cent of family members). They also felt that they were given sufficient information to make an informed decision (96 percent of family members).

Since we first released this study in 2014, 1,236 family members have participated in the study. This includes 1,166 family members who consented to donation and 70 family members who declined donation.

In Wave 4, most donor family members (96 per cent) felt that the ongoing contact from DonateLife staff following donation had been helpful.

Results also showed that organ and tissue donation helped families in their grief and provided meaning to their loss, with 89 per cent of the donor families finding comfort in their loved ones’ donation. 99 per cent of donor family members reported they felt comfort when receiving correspondence from a transplant recipient.

The release of this report comes as we prepare for DonateLife Thank You Day on 22 November, a national day to acknowledge the generosity of donors and their families who make organ and tissue donation possible.

New guidelines are also available to support donor families and transplant recipients to write anonymous letters. DonateLife Thank You Day offers an opportunity for recipients to write to their donor’s family and say “Thank you”.

We acknowledge all donors and their families who generously consented to organ or tissue donation, and agreed to take part in this study. The full report is available here.