Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Hansard source

In rising to speak on this bill, I would first like to pay tribute to the late Dr Carey Denholm AM, a friend of mine who died in 2018. Dr Denholm was a double-lung transplant recipient and a fierce advocate for the life-saving benefits of organ donation. Dr Denholm and his wife, Laura, are the co-authors of the book The CarerPartnering a transplant recipient, which talks about the vital role that carers play in supporting transplant recipients. Proceeds from the sale of this book help raise funds for transplant recipients, their carers and families. In November 2017, roughly a year before his death, Dr Denholm and his wife, Laura, invited me to a forum for the DonateLife thank you day, where I had an opportunity to meet with transplant recipients and families of organ and tissue donors. This was an incredibly powerful experience. There is, after all, no greater gift anyone can give than the gift of life. If you ever have the opportunity to speak to a recipient or the family of a donor, I strongly encourage you to do so, because if you do you will understand two things: (1) Organ donation saves lives; and (2) organ donation offers the families of donors the opportunity to find some positive meaning in the death of their loved ones.

Nothing whatsoever can take away the grief of death, but knowing that your loved one has saved a life and the thought that there is part of them living inside someone else, sustaining them and giving them life, is an incredibly powerful way to help them through the grieving process. We need as many Australians as possible to register for organ and tissue donation because the conditions that allow for donations are so rare. To be able to donate, an organ and tissue donor needs to die in hospital with well-functioning organs. Only two per cent of Australians who die in hospital meet this condition. In 2022 that meant 1,400 people died in a way that organ donation could even be considered. Of those 1,400, requests for donations were made to family members in 1,300 of these cases. In 701 of these cases, the family said yes, representing a national consent rate of 54 per cent, and 454 of those actually became organ donors, with their organs going to 1,224 recipients. This is certainly a good outcome but we could be doing better and we need to.

There are 1,800 Australians waitlisted for a transplant and around 14,000 additional Australians on dialysis, some of whom need a kidney transplant. Among the waitlisted Australians are people with heart failure, infections or defects, people with lung diseases such as cystic fibrosis or emphysema, people with liver disease, hepatitis B or hepatitis C or congenital liver defects, people with type 1 diabetes who need a donated pancreas and people who need bone tissue or skin grafts. Without a transplant, people on the waitlist face a severely diminished quality of life and many have life-threatening conditions.

There are two simple variables we need to change to increase the rates of organ and tissue donation. One is the number of Australians on the organ and tissue donation register. Despite the overwhelming majority of Australians supporting organ and tissue donation, only 46 per cent are on the register. Anyone aged 16 years and over can register and the process of registering only takes one minute. The other variable is the number of families that agree to donating even when the loved one who has just died is registered. That is why it is essential that anyone who registers as an organ and tissue donor discusses their organ donation wishes with their family. While the rate at which families say yes to donation at a little over half seems disappointing when the donor has already clearly indicated their wishes by registering, we should recognise they are having to make this decision quickly at a time when they have suffered a great personal trauma and are grieving. Taking this into consideration, a more positive way of looking at it is to acknowledge the extraordinary courage of the 54 per cent who agree to the request to donate and not seek to judge the remainder who said no. It's easy for a dispassionate observer to judge that decision—to say it defies logic. 'You cannot bring back your loved one. Why would you not want to save a life?' But, unless you have recently suffered the tragedy of the loss of a close family member, it's impossible to know exactly what you would decide in the situation. I just want to take a moment to reflect on the family members who have agreed to their loved ones' donation wishes to commend their bravery and to thank them for their lifesaving gift.

One of the key ways the Organ and Tissue Authority, or OTA, tries to get more donors on the register and encourage more families to honour the wishes of their loved ones who have registered to donate is community education and awareness. The statistics on the number of lives that have been impacted by organ and tissue donations are compelling. The most powerful messages OTA can use are the personal stories of transplant recipients and the stories of families who said yes to organ donation during one of the most tragic and confronting times of their lives. I have no doubt about this, having spoken directly to recipients and donor families many times but especially at an event organised by the Denholms five years ago. I sincerely thank Carey and Laura Denholm for giving me that opportunity. I hope more Australians can have the opportunity to hear such stories, which are both profoundly heartbreaking and heartwarming at the same time.

Unfortunately, telling these stories publicly is not as simple and straightforward as it may sound. Each state and territory has its own human tissue act. There are varying limitations in these acts around what information may be disclosed identifying donors or recipients. Three jurisdictions—the Northern Territory, South Australia and Western Australia—prohibit all persons from disclosing information, including the family members of donors. As you can imagine, this puts a huge constraint on the ability of the OTA and Commonwealth-funded state and territory DonateLife agencies to engage in community awareness activities involving donor families. Even something as simple as talking about a loved one's organ donation in a commemorative ceremony can be restricted by state and territory legislative provisions. This bill will nationally harmonise the legislative provisions in relation to the disclosure of organs donors' information. The bill allows the OTA and DonateLife staff to obtain consent from an extended list of family members of a deceased donor before including information about the deceased donor in their promotional and educational activities. If consent has been given by an authorised family member, as defined in the bill, the law of a state or territory will not prevent the publication or dissemination by OTA and DonateLife staff. This will enable families of organ donors to tell their stories and, in doing so, encourage other Australians to register as organ and tissue donors and to have conversations with their families about their donation wishes. The bill maintains privacy safeguards which help the organ and tissue donation system to function effectively. It will not facilitate direct contact between donor families and organ and tissue recipients. The rights of both donor families and transplant recipients who wish to remain anonymous will continue to be protected, while donor families and transplant recipients can continue to contact each other anonymously through their state or territory DonateLife agency.

The stories that the OTA and DonateLife authorities want to tell will be very powerful. There is broad agreement by psychology experts that storytelling is far more persuasive than facts and statistics, as it's far more effective at making the audience remember the message. For example, to read some of the stories that have been told, you can visit donatelife.gov.au, then click on 'Who will be helped by my donation', then 'Donation stories'. I'll quickly read one such story as an example:

When 10-year-old Sophie grew her angel wings in 2016 her family didn't have to think too long about giving the gift of life to others, in fact her mum Karina said it took about 30 seconds for them to decide.

"Of, course we would donate. Sophie always wanted to help people!" she said.

In fact, the last words young Sophie wrote on her whiteboard in her bedroom was "live life peacfuly (sic)".

"She had a beautiful spirit and caring nature, so we knew this was something she would want to do," Karina said.

"Knowing Sophie's generous donation has enabled many people to live a fulfilling life, warms my heart."

Not only will these stories help to overcome some of the stigma associated with organ and tissue donation, but they will hopefully help to overcome some pervasive myths. I'll take the opportunity now to tackle some of the myths about organ and tissue donation, but I also encourage anyone listening to check out the 'Myths and Facts' page on the DonateLife website. The first myth is that medical professionals will not try as hard to save the life of an organ donor. That is not only completely false but very hurtful to medical professionals. The first priority of medical professionals is to save a patient's life, and they work incredibly hard to do so. Organ donation is only considered after death, and the donation register will not be checked until after the patient has died. Another myth is that organ and tissue donation will disfigure the body. Organ and tissue donation is conducted by professional surgeons, who make incisions and dress the wounds carefully. All organ donors are treated with dignity and respect.

Then there are those who claim organ donation is against their religion. All major religions support organ and tissue donation. Some people think they are too old to donate their organs, but the fact is that people as old as 80 have been organ donors. Age is not a barrier to donation. As I've said, anyone over the age of 16 can register as a donor, and people of any age can donate. You also do not have to be in perfect health. In fact, even people who smoke, drink or have an unhealthy diet may still have organs suitable for donation. Finally, there is the myth that anyone in Australia can register as a donor on their drivers licence application. If you live in South Australia, you can register to be a donor when applying for or renewing your drivers licence, and then this is transferred directly to the Australian Organ Donor Register. In every other state and territory, you have to join the register directly. It takes one minute, as I've said, to join and roughly the same amount of time to check if you're already on the register.

In concluding, I would like to encourage all senators in this place and members in the other place, as well as anyone listening to these proceedings, to register as an organ and tissue donor if you have not already done so. As I said earlier in my contribution to this bill, the process of signing up takes one minute. In fact, jump on your computer or get the phone or tablet out and do it right now. What are you waiting for?

Just remember: if you are truly committed to being a donor should the conditions for donation be right, you must discuss your wishes with your family. If you have not spoken to them by the time they have to make the decision, it goes without saying that it will be too late.

A final point I'd like to make is that as a society we do not talk enough about death, dying, grief and bereavement. In fact, I think I'm the only person in this place that constantly talks about those issues. I often say this in discussion about palliative care, but it's also relevant to organ donation and the need to have conversations about donation wishes. I have made this point many, many times before and spoken about how it prevents Australians from having a good death or seeing their end-of-life wishes fulfilled. The ongoing taboo about discussing death is also leading to less conversation about what we do with our bodies after death. It's worth noting that 8 August was Dying to Know Day, an awareness campaign aimed at discussing and planning for end-of-life. I'm in no doubt that if death and dying were discussed more frequently and openly, particularly amongst couples and families who take the opportunity to express their end-of-life wishes, we would have more organ and tissue donations and more Australians receiving the life-saving transplants that they so desperately need.

Having said that, for those who have experienced the tragedy of the death of a loved one, I can appreciate that this debate may cause you distress. If so, I strongly encourage you to contact Lifeline on 131114 or beyondblue on 1300224636 or, in the case of a life-threatening emergency, to call triple 0 immediately. Thank you for the opportunity to contribute to the debate. I commend this bill to the Senate.