Jan McLucas (Queensland, Australian Labor Party, Parliamentary Secretary to the Minister for Health and Ageing) Share this | Hansard source

I am extremely pleased to be able to conclude the debate on the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008. I thank senators who have contributed today. Support for the concept of organ and tissue donation in Australia runs at more than 90 per cent. From the contributions of senators and members, it seems that support in the parliament is running at 100 per cent. I thank senators and members for that support. Much of that support is generated by the stories of lives transformed as a result of successful transplants—like the delightful Cordelia Whatman, whom the Prime Minister spoke of when he introduced this bill in the other place; or John Coggan, a wheat farmer and heart transplant recipient from Meandarra, who recently raised $75,000 for organ transplant research; or Sam Chisholm, the former CEO of the Nine Network, a double lung transplant recipient and powerful advocate for organ and tissue donation.

But today I want to focus on the other side of the equation: the donor family. The inspiration we gain from hearing about organ and tissue recipients is replicated in the story shared by their families. I would like to relate the story of Tom Overstone. Tom’s mum, Helen, has given her permission, through Transplant Australia, for me to speak about Tom and their family today. Tom Overstone was in the gap year between high school and further studies when he was in a tragic accident in mid-2007. He was 17. He never regained consciousness, and he was pronounced brain dead after five days on life support. Tom’s organs were donated and saved the lives of four people. Reflecting after their experience last year, Tom’s mum, Helen, said:

All four of us were registered as organ donors. We did it when Tom was 13 and Megan was 15. We had discussions about organ donation around the dinner table. When Tom was on life support, one of his best mate’s said he and Tom had had a discussion about brain death and what would happen if they were each in that situation. Tom told him that he would never want to be in a “vege state”. This was really good confirmation for us of everything we already knew. I think I’ll never get over losing my son but I know Tom has done something really good for somebody else. I have received two lots of letters from recipients—

those letters are de-identified letters organised through the transplant agency DonateWest—

The letters expressed just how grateful the people were. It brought me tears of joy.

Tom’s sister, Megan, said of her brother:

We saw Tom after his organs had been removed, and he looked beautiful. I was worried that he wouldn’t look like my brother, but he looked gorgeous. It was just like he had had an operation: it was all neat and beautiful.

Through their brave and generous decision, the Overstone family radically change the lives of many others—those of the recipients of Tom’s organs, and their friends and families. Their decision to discuss organ donation around the dinner table some years earlier is an example to us all. Sadly, though, we know that, despite the fact that over six million Australians have registered to donate, last year there were just 198 deceased organ donors in Australia. While this resulted in 657 transplants, it met just one-third of the demand.

There is a very real human cost in these statistics. For too long, Australians have been left waiting for transplants that could mean the difference between life and death or between a normal healthy life and a life of debilitating disease. We urgently need to turn this situation around and lift organ donation rates not just in the short term but also over the long term. We need enduring systemic changes so that there can be a sustained increase in donation rates to meet the likely increased demand for organ and tissue transplants in the future.

The government’s reform package, of which this bill is one part, is our best possible chance of doing this. It is a significant $151.1 million package that will ensure a coordinated national approach to organ and tissue donation. The package of reforms addresses the two main issues which are at the core of our current difficulties in lifting donation rates: lack of education and support for families making the difficult decision to donate; and lack of national leadership and coordination.

On the first of these two points, the reform package includes initiatives to encourage and support Australians to talk about organ and tissue donation and to not only become registered donors on the Australian Organ Donor Register but, even more importantly, make sure that their families understand and respect their wishes, just as the Overstone family did. The most common reason cited by families when they decline to donate a deceased relative’s organs or tissues is that they simply never discussed with their relative whether they wanted to donate. There is no doubt that this is a very difficult topic. It is one that most of us find challenging to discuss, particularly when we are confronted with the possibility of losing a loved one.

We also know that there are many myths surrounding organ donation, and these myths can impact on our own decision to donate or our decision to agree to allow a relative’s organs to be donated. We also need to have those working in our hospitals trained to identify potential donors and, in that situation, to always ask a family whether they would agree to donation.

The new Australian Organ and Tissue Donation and Transplantation Authority will lead this change. The government’s reform package also includes $1.9 million for a national donor families support program managed by the new authority. The program will provide a nationally consistent set of services and information resources for trained staff to offer to families. These services and information resources will be available throughout Australia.

While a sustained nationally consistent effort is important, we must not forget that each family will have differing needs and will be at different stages of the donation process. The program will therefore be firmly underpinned by the principle that each family must be provided with respectful support which is responsive to the needs of that family. The support will be available at the time when the donation is being considered, at the time when the donation proceeds and afterwards. All families whose next of kin are identified as possible donors will be offered bereavement counselling and support, and ongoing contact and support, whether or not the donation proceeds.

In addition to increased education and family support, the second very significant characteristic of this reform package is that, for the very first time in Australia, a truly national approach will be adopted. As this government has said from day one, we cannot continue the blame game between the Commonwealth, the states and the territories, especially when thousands of Australians are unnecessarily suffering on transplant waiting lists around Australia. National leadership must be taken in order to address the current barriers to organ and tissue donation and transplantation, many of which stem from our current poorly coordinated system.

This bill and the broader package of reforms of which it is part deliver on our promise to cut through historical delineations and to provide national leadership by establishing a new national authority to drive the implementation of this reform package. The authority will oversee the implementation of nationally consistent processes and systems, beginning in the local hospitals, with greater support for families, enhanced professional education, and sufficient resources to maximise and measure the conversion of potential donors to actual transplants. This new national approach gives us the best possible chance of increasing donations and the number of life-changing and life-saving transplants.

We should not, however, underestimate the magnitude of the task ahead of us. Successful outcomes will require a concerted and sustained effort from all levels of government, from health professionals and from community organisations. On this note, I am very pleased and encouraged by the strong support of all governments in Australia and the sector. They recognise the significance of these reforms and have committed to work closely together to achieve possible changes.

But, ultimately, the success of these reforms will depend on each and every one of us thinking about organ donation and, like the Overstones, discussing it with our families, making our own very personal decision and doing all that we can to ensure that our families know our wishes. I would therefore like to add my voice to the appeal made by the Prime Minister at the introduction of the bill in the other place and appeal to all Australians: please discuss organ and tissue donation with your family, because it is your family who will make the critical choices if ever the day arrives when your organs may save the lives of others. If you have not registered on the Australian Organ Donor Register, I encourage you to do so and then, most importantly, talk about that decision with your family.

In closing, I would like to thank members of both houses for their contributions to the debate and their support for the bill. I would also like to acknowledge all those who have been instrumental in the development of the reform package—from those who raised issues and ideas at the 2020 Summit and those who shared their personal stories with me and my colleagues through to those in government and those in community and professional organisations. I acknowledge Anne Cahill-Lambert, who is in the chamber with us today. I want to also thank the National Clinical Taskforce on Organ and Tissue Donation and the cognate committee, who have all worked so hard to ensure that the reform package is practical, forward looking and firmly based on world’s best practice.

Finally, I look forward to the establishment of the new authority on 1 January next year and the first reports of the authority regarding its very important work—work which we are confident will see many, many more Australians experiencing the enormous benefits of organ and tissue donation.

I commend the bill to the chamber.