Transplantation and Anatomy (Disclosure of Information and Delegation) Amendment Bill

Second Reading

Adjourned debate on second reading.

(Continued from 26 September 2024.)

Ms PRATT (Frome) (16:00): I rise today as the lead speaker for the opposition on the Transplantation and Anatomy (Disclosure of Information and Delegation) Amendment Bill 2024 with just some brief reflections on the progress that this bill is making through the house. We note that it was subject to public consultation from 25 July to 16 August 2024 through the YourSAy website and through targeted engagement.

The consultation process was conducted over a four-week period from 25 July to 16 August and there were 85 responses received. In breaking down those numbers, it is interesting to see how widespread the responses were across the country: 70 per cent of the respondents lived in states other than South Australia, meaning that only 30 per cent, or 21 out of 82 responses, were from our state. That is a small pool but it is understandably so.

The survey was distributed for responses to its members throughout Australia by an interstate-based organisation, which would, of course, explain those contributions. In addition to transplant recipients, intended donors and transplant recipient families, the majority of respondents identified as the family of a deceased donor.

Stakeholders from across Australia have submitted written submissions to proposed amendments to the Transplantation and Anatomy Act 1983 aiming to clarify legal matters for South Australian families of deceased donors or those who received organ or tissue transplants. This bill amends the South Australian Transplantation and Anatomy Act 1983 to allow families to share stories about their deceased loved one's donation or transplant. The act protects identifying information about a donor or recipient from public disclosure, except with the donor's consent.

This bill also makes minor administrative amendments to modernise the act and allow ministerial delegations, and we note that similar amendments have been made in several jurisdictions, including Victoria, New South Wales, Tasmania, Queensland and the ACT. I note from the consultation summary that the Australian Law Reform Commission announced an inquiry into human tissue laws in August 2024 to determine if legislative reform was needed to harmonise laws across Australia. It is expected that jurisdictional legislation will be harmonised to correspond with that commission's review outcomes into the future.

Reflecting on just some of the feedback that has been received through the consultation process, including concerns that were raised, the sharing of donor stories is supported for families of deceased donors and recipients, but some concerns were raised about the unauthorised release of personal information after their death.

The sharing and release of information, it is suggested, should be limited in certain circumstances, particularly where it may lead to the release of personal or identifying information about transplant recipients by other parties, particularly donor families, without consent. Some respondents advocated for system changes, including direct contact between donor family members and recipients of donor organs. However, a counterview was expressed that the proposed amendments were not appropriate for the South Australian legislative change as it does not consider the emotional and life-changing journeys of donors and recipients.

This bill amends the current legislation to restrict information disclosure to professionals involved in tissue removal, body donation and post-mortem examinations. It allows consent from a next of kin or personal legal representative on behalf of a deceased donor or recipient. These changes aim to improve legal clarity for donor families, allowing them to share their stories about their loved ones publicly and in person, and it is an important amendment bill. The opposition supports the bill.

The Hon. N.F. COOK (Hurtle Vale—Minister for Human Services, Minister for Seniors and Ageing Well) (16:05): I most certainly rise to support the bill. It is a complete truism, but our world and particularly medicine has changed so much in the last couple of centuries. A little over 200 years ago, we saw the first ever human-to-human blood transfusion in 1818, although earlier attempts had been made horrifically with various types of animal blood, and even with milk.

In the 1880s, we saw the evolution of the X-ray, and in 1901—the same year the Australian Federation was formed—we discovered that humans actually had different blood groups and a bright spark somewhere worked out that we might have better success with transfusions if we actually tried to match the blood types.

World War I, the war that was supposed to end all wars, was fought without antibiotics and much of modern medicine as we know it also did not exist. It was only as we moved into the Second World War that penicillin went into large-scale production, but even most of that conflict happened without easy access to antibiotics. Back then, major operations were conducted on a hope and a prayer that post-op infection did not kill the person even though a surgeon had saved them from a terrible injury in the first place. Advances like penicillin helped to open the door from one of the greatest advances in human medical history, something that early human societies had only talked about in stories about gods and magic.

In the 1950s, we saw the first ever transplant of a human organ—a kidney—between two identical twins. I saw my first ever kidney transplant as a student nurse at The Queen Elizabeth Hospital. It was the most incredible experience to watch a patient I knew receive a donor kidney: pale in an esky, washed in a bowl and placed carefully into the patient and, through meticulous sewing, then connected to that patient. As the clamps were released, the beautiful rush of pink came into the kidney and the blood supply commenced giving life not just to the kidney but to the person who received the kidney transplant.

In following decades, we saw people benefit from thousands of kidneys and from hearts, lungs and livers. I also saw the very first person receive a bone transplant at The Queen Elizabeth Hospital—all these things saving and transforming lives.

As parents, we give the gift of life to our children and in return they give us joy, a lot of heartache, stress, a range of other requests, send us broke and all the rest of it, but this all changes as they age. Others in our community give the gift of life. Sometimes a doctor, a nurse or a person with the right first-aid skills save someone from an episode of choking—I myself had an extraordinary experience on the weekend at a sausage sizzle; anyway, that is best left unsaid—a heart attack or any number of other medical emergencies, and others quite literally give part of themselves to save another.

This might happen between people who know each other, like when someone in a family has matching bone marrow or the right tissue type, just like that very first kidney transplant going back 70 years ago. But most often, transplantation and donation is a gift between two people who will never meet, who will never know what it meant to the other to give the gift of life or receive it. Organ donors are some of the most important unsung heroes in our community, and it is important that we can talk about the gifts they gave and the lives they saved in order to encourage more people to do the same.

But there has been some concern raised about whether people can actually talk about this in public, and this bill seeks to address that concern. The Transplantation and Anatomy (Disclosure of Information and Delegation) Amendment Bill 2024 amends section 39 of the Transplantation and Anatomy Act 1983 to clarify that the disclosure of information provisions apply only to relevant donation and transplant professionals. The bill provides that a next of kin or personal legal representative of a deceased donor or recipient can consent to the disclosure of information about that person.

Other jurisdictions in Australia have changed their laws to give more confidence to families and loved ones to talk about organ donation. I welcome this move in South Australia, and I thank my friend the Minister for Health, the member for Kaurna, Chris Picton. Privacy and confidentiality in health settings is absolutely critical, and this bill ensures that those protections continue. What it will change is to ensure greater clarity for donor families who acknowledge their loved ones at public services and events or in raising awareness about organ and tissue donation.

I will not talk for long about my personal family journey that we have had, but everybody in this place knows that we did make that decision. While it is a very difficult decision in very, very difficult times when you are losing a loved one, actually if you have had deep conversations with your loved ones before, you can trust that the decision you are making is the right one.

When our son was in hospital after receiving a brain injury and there was no hope that he would survive, we had very difficult conversations as a family—questioning, of course. I leapt from position A to position S, T, U, V, W, X, Y and Z very quickly because I was a nurse and I had put myself into familiar surroundings in the intensive care unit amongst my colleagues, in a familiar place, but that is an extraordinary position to be in. Families, including my own, had to have their own time to make decisions, but the DonateLife team and the brilliant intensive care team, my friends, helped all of us to make the decision happen at a pace that we could all be comfortable with.

Probably the most important thing about organ donation is that, when the time is there for a discussion, everybody has to be able to make the decision in their own time, at their own pace. We knew that my son Sam wanted to be an organ donor. He had proudly selected to be a donor on his driver's licence. Also, he and I had had multiple conversations at the end of very lengthy and often stressful and distressing workdays about people who were to be organ donors or had become organ donors during the course of my shift. He knew exactly what that was about, and we were comfortable that he would have chosen to do exactly what he did on that day.

Being a community as it is, there were several things that meant at that particular point of time I knew of a couple of people who had received an organ from him, something I needed to keep to myself. Many people who received an organ from him, because of the highly public nature of what happened, knew whose organ they had because of the timing.

So we went for a long time knowing, and them knowing, and then one day a fellow came into my electorate office and said, 'I think time has passed long enough, and I've lost friends without sharing good information,' and, to cut a long story short, this gentleman was the best friend of the husband of the lady, Joyce, who received one of my son's kidneys. Not only was he the best friend of her husband, he was the grandfather of one of the girls who started reception on the very same day and in the very same class as my son. Adelaide is a very small town.

From there, it has become the sharing of photographs and little texts now and then—little messages that are beautiful and really rewarding, absolutely satisfying. We have recently spoken about this publicly and she is very proud of her grandchildren supporting the Sammy D Foundation. We did not even put a thought to the fact that we could have been breaking the law, so thank goodness for this. I think we all know that when there is a good message to be told, we should share it. G'day to Joyce and the family. Keep on keeping on; you are a terrific family.

It is really important that we have such a great system in South Australia. A person's interest in organ and tissue donation after death is captured through their driver's licence, and that makes us unique. If you have agreed to do this, it is printed clearly right next to your mugshot on your driver's licence, which makes it much easier for family as well—trust me. South Australian residents are prompted to answer an optional question about their interest in registering to become an organ donor as part of both online and paper-based licence applications and renewals. Thanks to this kind of approach, South Australia leads the nation with 73 per cent registration for organ and tissue donation, nearly doubling the national average of 36 per cent.

We have a great tradition in South Australia of leading the nation, just like we did with women voting and running for parliament in 1894, container deposit legislation back in the seventies, and our push for renewable energy. We are leading in many ways, and this is terrific. Other places thought we were bonkers or that it could not be done, and we have happily proved them wrong. We start things early, we take a commonsense approach and we get results that leave the rest of the country in our dust.

This legislation is effectively catching up to other jurisdictions, however, when it comes to talking about organ donation. It gives us a chance now to extend our national lead when it comes to the numbers, I believe. This important legislation will remove any concern for, or possibility of, prosecution against a family member of a deceased organ donor or recipient.

As Minister for Seniors and Ageing Well, I have recently been involved in Plan Ahead Week which, again, is a really important thing to make these plans very clear for when you depart earthside, when your family is left to make decisions, or at a time when you are not able to make your own decisions. I have talked about six steps to doing this over and over again in many public forums.

Talk with your family, your circle and your important, trusted people; it might be your medical practitioner or someone else in the community, but it could be family. Ensure your will is up to date, you have your enduring power of attorney completed, you have an advance care directive and you have ticked, signed, completed, applied, registered to be an organ and tissue donor. After that, have the conversation again, lodge all the paperwork in copies with your family, your friends and your trusted circle, and make sure there is no doubt. It takes a great deal of worry from you.

Having a conversation about end-of-life medical care is important, but so is making your position clear about organ and tissue donation. You can make that decision now and remove any pressure or stress on your family because they may be asked to make that call at a very tough time. All the advances in modern medicine that I spoke about earlier, including the development of modern hospitals, has been absolutely miraculous, but they have also meant that people are less exposed to both the beginning and end of life compared to previous generations when people were often born in the front room of the house and departed through the same doorway. Back then, death was a lot more normalised than it is now.

Because of this, conversations about end of life have become less common than they once were. This bill can help to shift the dial on the issue and do so in a really positive way. Death is often tough and traumatic for families, but we have the choice. We have the option to make death not just a part of life but something that can save a life. I commend the bill to the house.

The Hon. C.J. PICTON (Kaurna—Minister for Health and Wellbeing) (16:20): I would like to thank members for their contributions to the bill, particularly the member for Frome, indicating her support on behalf of the opposition, but particularly my colleague and friend the Minister for Human Services, the member for Hurtle Vale, who speaks with passion, honesty and significant personal experience on this issue and brings to the house her life experience and that of her family, which is very welcome.

Organ donation is something that I think all members of the house would regard as incredibly important. Part of that being important is the donor families being important: honouring them, supporting them, thanking them. We have had this uncertainty in our laws. We have had this question mark as to whether that can appropriately occur. It has been raised with me by a number of donor families over the past couple of years that I have been the minister, and we are therefore now seeking to address that, to clarify this legislation and make clear that there is no risk to donor families in making well known the incredible gift that their loved one has made to somebody else.

South Australia has a really strong tradition of organ donation. We are the only state that allows driver's licences to be used to indicate people's support for organ donation, the fact that they want to be part of that. That means that we have the highest opt-in rate anywhere in the country. But it is not just that. It is also the staff we have, the culture that we have, within our intensive care units in particular, the incredibly well-trained staff who have those difficult conversations with families about their loved ones at the worst possible time for those loved ones in losing somebody. It allows us to have a very strong rate of organ donation in the state that allows more lives to be saved. I hope the passage of this legislation will further cement that incredible track record, further cement our legislative framework to make it as easy as possible for those family members to consent for that donation to occur and for those donations to be able to save as many lives as possible.

I would like to thank the team in the Department for Health and Wellbeing, who have worked on this bill, particularly Susan Ireland, Amelia Southam and Ben Stirling, and also Dylan Anesbury in my office. I thank all the organ donation organisations, representatives and individuals who provided feedback and support for the legislation, particularly DonateLife SA, Mr Oren Klemich at Transplant Australia, Donor Families Australia, the Heart Foundation and others. With that, I endorse the bill to the house.

Bill read a second time.

Third Reading

The Hon. C.J. PICTON (Kaurna—Minister for Health and Wellbeing) (16:24): I move:

That this bill be now read a third time.

Bill read a third time and passed.