Mark Butler (Hindmarsh, Australian Labor Party, Deputy Manager of Opposition Business in the House of Representatives) Share this | Hansard source

[by video link] It was a great pleasure to listen to the remarks of the member for Higgins on this Australian Organ and Tissue Donation and Transplantation Authority Amendment (Governance and Other Measures) Bill 2021. It is a reasonably technical bill and I'll talk about its provisions in due course, but this is an area of policy about which I am also passionate, having had the great privilege of being the Parliamentary Secretary for Health and having executive responsibility for the introduction of this authority and the general DonateLife program that the member for Higgins talked about and the member for Ballarat before her.

I think it's fair to say that Commonwealth involvement in this area would simply not have happened without the passion of former Prime Minister Kevin Rudd, who himself is a recipient of donor tissue. He listened to the advocacy and campaigning of a range of different groups across Australia—groups like Gift of Life and many others—who for years had been drawing attention to the comparatively low levels of organ donation in Australia, particularly, frankly, in our two largest states. The member for Higgins talked about the state variability in organ donation rates. At the time when our government was introducing the DonateLife program, back in about 2009, the rates were even more variable than they currently are. Literally hundreds of Australians every year were missing out on life-saving transplants, which meant, tragically, that many of them died not having received the transplants that could have saved and then extended their lives.

Back in 2009, when we introduced the DonateLife program—we launched it, I remember, at the Lodge that year—rates in Australia were stuck at a little over 200 donations per year. That was a rate of less than 10 donations per million, which is the way in which we measure organ donation rates around the world. The member for Higgins mentioned that Spain has for many years now been the global leader in organ donation rates. We were running at about 10 per million; Spain is running at about 46 per million. For every organ donor, potentially three, four or even five lives can be saved through different organs being donated to people awaiting transplants. I talked to many of these people at the time, and what that meant was that literally hundreds of Australians were waiting for the phone call with their bags packed. They were ready to travel to hospital at a minute's notice to receive that life-saving transplant, but, frankly, because of our comparatively very low rates of organ donation, for so many that call never came.

Our program, the DonateLife program, which was supported by the then opposition, now the Liberal Party government, was relatively simple. It was evidence based. It was informed by a good understanding about what worked overseas and, frankly, what was working in my state, the state of South Australia, where the organ donation rate, even back then, was more than double the national average. It was substantially more than double the organ donation rate of the larger states of New South Wales and Victoria.

The member for Higgins talked about some of those elements, and I want to go through the key ones as I saw them at the time and as we saw them as a government. The member for Higgins will understand that the most important element is the clinical culture in hospitals. What we found in South Australia was that, over time, a culture had developed in our major hospitals—particularly in the intensive care units, which are really the centre of this question. There was a very clear culture that, whenever there was a tragic passing of a patient, it was part of the process of dealing with that death for any opportunity for organ donation and, consequently, transplants to be actively pursued by the clinicians. I remember talking to clinicians here in South Australia about their experience as younger clinicians, as trainee doctors. If the older supervising clinician came into work of a morning when there had been a tragic death the night before and organ donation had not happened, the younger clinician would be interrogated, and interrogated severely, about whether the opportunity for organ donation had been pursued.

I think all of us understand how delicate that can be and how it is just another responsibility or duty to add onto the very long list of duties our clinicians already have. But what was clear was that the culture of our hospitals was a very key determinant of the different organ donation rates that we saw at that time across Australia. Once we'd identified the cultural issue, though, hospitals needed to have clinical staff whose job it was to deal with this challenge. From memory, the most substantial share of the money—about $151 million, I think—was committed by the Rudd government to one of the central programs. It went into employing donor nurses so that there would be nurses at our major teaching hospitals whose job it would be to pursue these opportunities. Our major tertiary hospitals are where these opportunities for organ donation tend to arise. They were trained in having these very delicate conversations with the grieving families—families who'd only in recent minutes and hours learned of the death of their loved one. Having that conversation, as I think we all can imagine, is an incredibly delicate task, and employing donor nurses so that there were people specifically allocated, specifically trained to do it, was a central element to the DonateLife program that we put in place.

A range of other parts of that program have, I think, stood the test of time. I'm sure it's incredibly gratifying to everyone from groups like Gift of Life and many others who advocated for this type of program for so long to see the really substantial improvement in organ donation rates over the last decade. I will talk, as the member for Higgins did, about the decline in 2020. That was clearly driven by the pressure on our hospital systems imposed by COVID. But, if you look at the 2019 rates, instead of having organ donation pretty steady at around 220 per year across the country—less than 10 per million people—the donor rate has climbed to 550. That is substantially more than double the 2019 rate, which had been stuck at 220.

Given that every organ donor, on average, allows for three or four different organ transplants, that meant hundreds and hundreds of people every year, leading into 2019, were able to receive the gift of life—the extraordinary opportunity to receive a donated organ that would potentially extend their life for years and years or even decades. Organ donation saves hundreds of lives every year.

One of the highlights of my increasingly long career in this parliament was, as the parliamentary secretary for health, being at the opening of the 2009 Transplant Games in the Gold Coast. This is an international sporting event that, not unlike the Paralympics that are underway now, is only open to recipients of organ transplants. Sitting in that hall in the Gold Coast, as representatives of every country across our planet walked in behind their flag to represent their country over the coming weeks of that games, was an extraordinary experience. Every single one of those people, of all ages and backgrounds, had been given the gift of life through an utter tragedy such as a car accident or some other life-ending event.

One of the extraordinary things about those games—and we see this at DonateLife events around the country all the time—was the presence of donor families, the families of those whom they had lost, families who were feeling a small measure of relief to their grief in the knowledge that, through their loved one's death, someone else had gained the opportunity to continue to live and, in some cases, a number of people had gained the opportunity to continue to live. This is an extraordinary gift. Obviously subject to consent and privacy arrangements and such like, the bringing together of grieving donor families with transplant recipients, who are so extraordinary grateful for that gift of life and the opportunity to have some certainty and some opportunity to keep on living, is really one of the most beautiful moments that any of us as members of parliament can get to witness.

I want to commend the work of the authority, of the donor nurses, of clinicians across the country who do this incredibly important work on top of all the other things Australia's world-leading conditions do each and every day in our hospital systems and beyond. It really is a great inspiration to us all. But, as the member for Higgins pointed out, there is still much more we can do. I don't propose to follow the member for Higgins into the debate about an opt-in versus an opt-out system, except to say that I learned early on in my time as the Parliamentary Secretary for Health—not being a clinician myself, obviously—that that debate is not so simple. That debate is not as simple as we would like to believe as we step into it. I was told by many clinicians about their very deep concerns about what would arise with grieving next of kin were an opt-out system in place. The clinicians would then need to deal with next of kin who might have very strong views about organ donation, but a process had simply not been gone through by that family with the person who had lost their life to formally opt out of the system. So I'm not entirely convinced about this. Of course, all of these things should never be closed debates. There's always the opportunity to continue to debate them, but I am not convinced about that question right now.

I do, though, think that the one area where we have not made the progress we would have liked to have seen back in 2009 is on the question of family consent rates. I remember, I think when we launched the DonateLife program, that the rate of consent by next of kin to organ donation was around 57 per cent. That means that, when grieving next of kin were asked by hospital clinicians whether they would consent to their loved one who had just passed away donating organs, about 57 per cent of family members gave their consent. The member for Higgins said that the rate was 58 per cent. I've seen a figure of 62 per cent. Whichever of those two is right, it demonstrates that, after more than a decade of this DonateLife program being in place, that consent rate has not shifted at all substantially. It's important to point out that, when the Australian community is surveyed about general support for organ donation as a concept, the overwhelming bulk of Australians show their support. The overwhelming bulk—85 per cent, 90 per cent or even more—of Australians say that, as a concept, they support organ donation. There is this structural gap of 30 per cent or more of Australians who appear to support organ donation as a general concept but aren't giving consent at the time when the issue really becomes a live issue and consent is being requested, so there is much more work for us to do here.

I think this generally reflects a lack of open discussion about death too often in the Australian community. We are often not comfortable talking about death. You see that reflected in survey work about organ donation. I also remember similar figures arising out of survey work that Palliative Care Australia and other groups like that do about end-of-life planning. Only about half of Australians will have had a discussion with their partner about their wishes for the way in which they spend their last hours or days, the degree to which they want to continue to receive treatment and other end-of-life or palliative care related issues. Only about 25 per cent of Australians will have had that discussion with their children, and similarly low rates will have had that discussion openly with their clinicians, their treating general practitioners and the like. So there is, I think, a general challenge for us to lift the rates of open discussion—difficult discussion, sensitive discussion, no doubt—that Australians have about these end-of-life issues. If people support organ donation as a general concept, at some point it would be good for us all to have discussions with our next of kin about our views, about whether, in the tragic event that we find ourselves in that position, we would like to see our organs donated. The research shows that when grieving next of kin are clear about their loved one's wishes they carry those wishes out. The research also shows—through published research I've read in the Medical Journal of Australia and such like—that when grieving next of kin understand their loved one's wishes, whether they were about organ donation or palliative care and such like, and feel confident that they are able to see those wishes carried out, their levels of grief and distress are substantially reduced and their level of mental distress at the loss of their loved one is substantially reduced. This is important work for us to continue to do.

I reflect and echo the call by the member for Ballarat—and the member for Higgins has made the same call—for people to have that discussion in their families and for people to register as organ donors, whatever the system might be. I renewed my driver's licence in South Australia in the last several days; as the member for Higgins pointed out, we have had that system in place for many, many years in my state. But there are other registers, including the DonateLife register, that we all want to encourage people to consider using, to ensure it's not simply left to your loved ones to try to glean what your wishes might have been, to ensure your wishes are clearly articulated through a register and through an open discussion that you have had with your loved ones.

Coming to this bill, which, as I pointed out in my opening remarks, is a somewhat technocratic bill, I have to admit to not completely understanding why the government has put us all in this position in the first place. When we set this body up, the Australian Organ and Tissue Donation and Transplantation Authority, we set it up in the very usual way in which non-corporate Commonwealth entities are set up—that is, with an advisory board that would provide broad strategic guidance to the entity, in this case the authority, and for the accountable entity to be the chief executive officer. This is the way in which non-corporate Commonwealth entities almost exclusively operate. That was, at least as far as I remember, a very successful model. Our first chair, as I recall—the chair I had the privilege of working with—was Sam Chisholm, the very-well-known media identity, who, tragically, we lost a couple of years ago. Sam, himself a double lung transplant recipient, was a passionate chair who understood that the role of the board—and he had some great members on that board, including David Koch, who had long been an advocate for improved organ donation rates in Australia, and many others as well, including clinicians—was to provide broad strategic guidance to the work of the authority, and that it was the role of the chief executive officer to manage the day-to-day work and ensure that the myriad legal obligations that all our authorities have were being carried out. That's why the chief executive officer was the accountable entity under the different pieces of Commonwealth legislation.

In 2017, for reasons I frankly don't understand, the government decided to change that and make the board the accountable entity. I'm not aware of another non-corporate Commonwealth entity that has the advisory board as the accountable entity instead of the chief executive officer, but that was the decision made at the time during Malcolm Turnbull's prime ministership. The new chair, who is well known to so many of us in the parliament, is Dr Mal Washer, who was 'the doctor of the House' before his retirement and then the election of the member for Macarthur, the member for Higgins and some others. Mal Washer was a well-loved figure across the aisle of the House. He is now the chair of the advisory board, and, as I understand it, has provided advice to the government to revert to the original position, which was that the chief executive officer be the accountable entity—a position that is seen as pretty standard practice across the range of non-corporate Commonwealth entities that make up part of our government.

The Labor opposition supports this bill—subject to the second reading amendment, which I thank the member for Ballarat for moving in my absence from the chamber over this fortnight. I commend the bill to the House, but I particularly commend the work of the authority and the clinicians who are employed under the DonateLife program, and those clinicians who work elsewhere through the health system who have seen our organ donation rates and, consequently, our transplant rates climb so dramatically over the last 10 years.

There is still much to do; we can see those rates climb even higher and see that gift of life given to more people, but the work over the last 10 years has been a credit to our country.

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