Bills

Births, Deaths and Marriages Registration (Tissue Donation Statements) Amendment Bill

Second Reading

Adjourned debate on second reading.

(Continued from 2 November 2022.)

The Hon. R.A. SIMMS (16:35): The Greens are supportive of this bill. This bill allows the next of kin of a deceased person to request that a tissue donation statement be included on any certificate, issued under the act, certifying the death of a person. It also enables the next of kin of a deceased person to request that an intended tissue donation statement be included on any certificate, issued under the act, certifying death. The Greens support granting formal recognition of a life-saving gift at the request of the family or next of kin of the deceased.

I want to commend the Hon. Nicola Centofanti for putting this issue on the agenda and for putting this bill forward. It is an important issue that she has highlighted, one that I think will impact many South Australian families, so we do appreciate her advocacy in this regard.

For someone who is seriously ill, an organ or a tissue transplant can mean the difference between life and death, being healthy or sick, seeing or being blind, or being active or never walking again. Transplants enable people to resume an active role in their family, their workplace and their community. Tissue donation includes bones, tendons, cartilage, connective tissue, skin, corneas and heart valves and vessels.

While an organ donor can save up to seven lives, a tissue donor can impact the lives of as many as 75 people. Since 2013, more than 38,000 deceased and living tissue donations have been made. Unlike organs, many more people can become eye and tissue donors, as these can be donated following death outside of hospital and tissue can be stored for longer periods of time. Tissues for donation must be removed within 12 to 24 hours after a person dies, and the donor does not need to be maintained on a ventilator.

In 2022, there were 2,748 tissue donors, which is 17 per cent of deceased persons, and in 2021 there were 3,307. The COVID-19 pandemic has impacted on elective surgeries, including joint replacement surgery, resulting in a decrease in living tissue donations. I understand that eight out of 10 families give consent to donation when their family member is registered to be a donor, but this number drops to just four out of 10 families when the family is unaware that the deceased person had that wish. The decision to donate a loved one's organs and tissues will be a difficult one for many families to make, especially at a time of great loss. The generosity of those families ought to be acknowledged and commended.

I hope that this is one of those instances where we see this house rise above politics and see all sides of this chamber support it. I cannot imagine why there would not be universal support for such a sensible proposition. With that, I commend the bill.

The Hon. C. BONAROS (16:38): I, too, rise to speak in support of the Births, Deaths and Marriages Registration (Tissue Donation Statements) Amendment Bill 2022, on behalf of SA-Best. We have already had an outline of what the bill seeks to do to provide the option of acknowledging organ and tissue donation on a death certificate upon the application of the next of kin.

I, too, commend the mover for bringing the bill to this place for debate. It is a simple way of recognising that a person's final act on Earth was selfless and compassionate, something which may provide comfort to grieving families and loved ones. It would extend to circumstances where donation was intended but did not proceed.

As we have heard, the bill is based loosely upon legislation in the ACT that passed in 2021. Though not expressly legislated here, there is also a second option of a letter from the Chief Minister of the ACT, which I understand could be replicated here but does not need to be prescribed in the legislation itself. The only caveat in the bill, which makes perfect sense given that every jurisdiction has its own legislation when it comes to births, deaths and marriages, is that the death must have occurred in South Australia as the jurisdiction tasked with issuing the death certificate.

According to the 2022 Australian Donation and Transplantation Activity Report, there are about 1,800 Australians on the transplant list. Only about 2 per cent of people who die in hospital meet donor criteria, which includes dying in an intensive care unit or emergency department, which is why intended donor rates need to be high.

I will just mention that I met some time ago with DonateLife to discuss the opt-out model for donation, as is the case in Spain, for example. At first glance, it does seem like a bit of a no-brainer. An opt-out model would serve to vastly increase donor numbers and ultimately save lives. But, as it turned out, DonateLife themselves at the time were supportive of our current opt-in model and I understand that position remains unchanged. It is something that we have talked about sometimes in this place, but I guess at the time I was not quite expecting that response from DonateLife. However, they are the experts in this area and they tell us the reasons why they think the current model we have works well.

It is currently left to the families to make the final decision and, though it is not definitive, registering on the Organ Donor Register helps in their decision-making. We know that because families of people who had expressed their wish via the register are far more likely to consent to donation. In 2022, 80 per cent of families gave consent when their family member was registered, 60 per cent gave consent when they otherwise knew their wishes, compared with only 40 per cent when they were not registered and had not been made aware.

These rates show just how important registration and, indeed, conversations with family and loved ones are when it comes to organ donation. Hopefully this bill will also serve a dual purpose, both in terms of providing comfort to those families in their time of grief and also, importantly, in terms of encouraging more organ donation. With that, I commend, once again, the mover of this bill for bringing it to this place.

The Hon. R.B. MARTIN (16:41): This bill proposes formal recognition on a death certificate of a person who has donated or expressed an intention to donate an organ or other tissue through processes managed by the Registrar of Births, Deaths and Marriages. I would like to thank and acknowledge the passionate advocates for this model of recognition and understand the government will give further consideration on how we can recognise these remarkable individuals. The selfless act of giving the gift of life to those in need is a testament to the boundless compassion that exists in humanity and is worthy of recognition.

The Organ and Tissue Authority and DonateLife network do a fantastic job recognising this selfless act and are committed to acknowledging organ and tissue donation through activities and events and should be commended. However, the scope of this bill is quite broad. There are a number of identified risks, implementation issues, low take-up of this type of scheme in the ACT, and well-respected recognition systems already in place. On this basis, we intend to undertake further work on an appropriate way to recognise organ tissue donors. Some of the concerns identified by government agencies, I am advised, include:

the sharing of information for this purpose, including disclosure, privacy and data sharing arrangements;

the scope of the bill in terms of the definitions of 'tissue' and 'donor', which may include not only deceased organ donors but all living organ and tissue donors and intended donors, as well as kidney, blood and other tissue donations;

the potential for the amendments to be applied retrospectively;

the evidence that would be required to support tissue donation statements and how this information could be verified at the time of death, including whether a person may have withdrawn their intention to donate prior to death;

whether the process in South Australia for recording an organ donation on a driver's licence constitutes an intention in writing; and

the potential for more than one million South Australians being eligible for recognition on their death certificate, not including blood donors.

I look forward to the relevant ministers looking at ways we can further recognise the selfless act of those donors giving life to others.

The Hon. N.J. CENTOFANTI (Leader of the Opposition) (16:44): I would like to thank all honourable members for their contributions, in particular the Hon. Robert Simms and the Hon. Connie Bonaros for their support. I also acknowledge the comments of the Hon. Reggie Martin, although I am disappointed that the government have not indicated their support. As the Hon. Rob Simms pointed out, this should be above politics. I hope that the government reconsiders its position between the houses.

Whilst this bill is not earth-shattering, it is important. It is important because it provides donor families who have experienced trauma and the devastating circumstances of losing a loved one—often tragically and without warning—with the chance to acknowledge that loved one by a simple statement on their death certificate in regard to the gift that they provided to let others live out their full lives.

This started because a dear friend of mine lost his wife and, in discussions, he suggested that he would have appreciated having the choice to acknowledge her gift of life to others on her death certificate. I started having conversations with other donor families in similar circumstances, and kept getting the same response; that is, they would appreciate the choice and the symbolism of that statement. I acknowledge that it is not going to be for everyone, but that is why it is an opt-in scheme.

I would also like to echo the words of the Hon. Connie Bonaros and place on the record that in the ACT, where similar legislation has been passed, the Chief Minister also provides the family of organ donors with the opportunity to receive a letter of acknowledgement from him or her. It is my understanding, and certainly the case in the ACT, that this is an administrative process that does not need legislative change. It was also the view in the ACT, at the time the legislation passed, that these two processes should be separated because some families may wish to have a formal acknowledgement on the death certificate but not receive a letter, and vice versa. Clearly, that needs to be the choice of the family.

There have also been some concerns raised by the government about whether this piece of legislation would reduce donation rates. I would just like to put on the record that there is evidence from around the world that acknowledgement of organ donation on death certificates has actually raised the organ donation rates. The top three tissue donation nations in the world—Spain, Croatia, and Belgium—all have the option for the donation to be acknowledged on the death certificate. The cornerstone of tissue donation policy for these three leading nations includes strong public education campaigns, collaboration with hospital and medical professionals, and support recognition for donor families.

It is obviously hard to know whether there is cause and effect but I would like to think that this is because when donor families have as good an experience as possible in what are otherwise such tragic circumstances, they are more likely to tell other families and individuals about that process, about that experience, and encourage more people to consider organ donation.

Finally, it is important that in addition to encouraging registration, we ensure that we are opening up the dialogue around organ and tissue donation in our community. This is a particularly important conversation for families because, as the Hon. Robert Simms pointed out, in Australia your family will always be asked to agree to organ donation. Registering and discussing one's decision provides the family with some certainty in a time of great uncertainty and tremendous grief. I firmly believe that this bill also assists with these conversations going forward, and so I commend the bill to the house.

Bill read a second time.

Committee Stage

In committee.

Clauses 1 and 2 passed.

Clause 3.

The Hon. N.J. CENTOFANTI: I move:

Amendment No 1 [Centofanti–1]—

Page 3, lines 15 to 23 [clause 3, inserted section 39A(6), definition of intended tissue donor]—

Delete the definition of intended tissue donor and substitute:

intended tissue donor—a deceased person was an intended tissue donor if consent or authority to remove an organ or other tissue from the person's body was given in accordance with the Transplantation and Anatomy Act 1983, but removal of the organ or other tissue did not proceed;

Amendment No 2 [Centofanti–1]—

Page 3, line 27 [clause 3, inserted section 39A(6), definition of tissue donor]—After 'consent' insert 'or authority'

These amendments seek to alter the definition of 'intended tissue donor'. After consultation with the Organ and Tissue Authority on their definition of 'intended tissue donor', I felt that an amendment was important to better align with their national definition and to better reflect the object of the bill so that an intended donor is someone whose next of kin has given the consent or authority for that organ donation in accordance with the act, but for a variety of reasons, which are usually medical, the removal or donation of that organ or tissue could not proceed.

Amendments carried; clause as amended passed.

Title passed.

Bill reported with amendment.

Third Reading

The Hon. N.J. CENTOFANTI (Leader of the Opposition) (16:51): I move:

That this bill be now read a third time.

Bill read a third time and passed.