Legislative Council, Thursday 8 August 2024

Ms FORREST (Murchison) - I welcome the opportunity to speak on this bill. Sometimes some of the smaller bills are always important, but some of these make such a difference in the lives of so many people. But Mr President, I want to address in mind a number of these matters here and just make a few points generally. It is quite interesting what some brings to parliament's attention and the relevant minister's attention; out-of-date legislation that is quite ridiculous when you look at it and made in good faith back in the day. But some of these provisions were not made that long ago.

Anyway, here we are fixing some of the problems that perhaps should have been fixed a while ago. We look at the provisions, particularly relating to organ donation and the ability of the family of a deceased person whose organs have been donated to actually speak about their loved one's donation and the impact they have had on the lives of others.

The comments made by the leader in her speech, was that the Western Australia government first raised the concern about this and then other jurisdictions looked under the rocks in their departments and found that it is the same here. The Donate Life Network is a terribly important network to support families and communities in considering these really important life-changing and sadly life-lost decisions. It has evolved beyond the four-decade-old framework. Now, I look back to four decades ago and yes, I was alive then, but the internet was not really a thing—not a thing that worked well, at least. When you think about the use of the internet to tell some of these stories. I guess, when it was put in place, it was never really contemplated, the need for such a network to operate in that way. So as time evolves, we do not always think about what limitations this might have. It probably seemed quite appropriate at the time, I am sure it did. But here we are fixing, modernising a piece of legislation that really needs it.

Not long after I was elected, so, you know, a number of years ago, probably about 17 years ago, I sat in a committee of this House looking at organ donation I was really eager to sit on that committee because my health background and having sat with families in the intensive care unit making that really difficult decision, and that is a long time ago, when the Donate Life network and the mechanisms for registering your desire to be an organ donor was not well understood and certainly not well engaged with.

I am pretty sure from memory, it was South Australia who had the opt out provision and some other jurisdictions, international jurisdictions, did. And the question that we were considering is whether we should have an opt-out or an opt-in arrangement. I think the majority of the members, if I can speak for myself and perhaps others who were on that committee, when we went into that inquiry, I had a view that, you know, why don't you make it opt-out? You are in, if, unless you say you do not want to be, and people then have to have the discussion. It seemed like a proactive way of making people talk about it, which is one of the key factors in the success of such a program.

Anyway, we took a lot of evidence, travelled to a few different jurisdictions and saw what they did and came back with the reality that the best program is an opt-in one. Jim Wilkinson was the Chair of that committee and, he, too, when he moved to establish that committee, expressed that view quite strongly. And I was in agreement with that, but really keen to participate in an enquiry to understand that. So it is really fantastic that it has worked as well when you look at the figures of the numbers of uptake that has been done, people registering as donors, and thus the flow on to people receiving or being recipients of donated organs. It really is a great body of work that the Donate Life Network have achieved in collaboration with all those that support them, the medical practitioners, the nurses, the other support staff they have around to help families at this time.

But what is even more important, is being willing to talk about when you die. We are still really reluctant to admit our own mortality, and we are also really reluctant to talk about what happens to our body when we are dead, as a general rule. I said this in the debate previously, well, when we were talking about this matter some time ago, but I will repeat it here, when one of my sons turned 18 I had a chat to him just one day, as you do, I said now want to make sure you are registered to vote, the list of requirements for him as far as I was concerned to participate fully in our democracy and everything else.

And I said, and while are you thinking about it, here is a form about organ donation. If you want to register, you do need to fill in this form. We had sent it in and you could not do that until you were 18. Anyway he duly listened and everything. And a couple of days later, he came to me and he said - I might have said to him, have you given any thought to the organ donation? And he said, 'yeah, no, I was kind of thinking I need my organs now'. He was joking, but I looked at him and I said, 'yes, I want you to have them for a very long time too. I hope I will never face with that decision at your bedside where that is even an option'. He said 'no, no, I have signed up already, Mum, it's okay'.

That is my son and, you know, that is the way he would lead me along sometimes. But it is those important conversations that we are sometimes reluctant to have. How do you start that conversation sometime? It is not always easy. So I do encourage anyone who might be listening, anyone who reads this and anyone who is interested in this matter, to make sure that they do talk to family or loved ones about organ donation familiarise yourself with some of the stories of the recipients of donated organs because they truly are extraordinary. I cannot imagine someone else's heart beating in my chest, but if that was the difference between life and death, which it would be, it must be a surreal thing to experience.

It is not an easy procedure, because there are all the issues that go with having the anti rejection medications which are not all that pleasant, as I understand. It is not a simple process. Even with people who do live donations of a kidney to a loved one, which happens relatively often, it is the donor that has the biggest operation. It is the donor that has the most pain afterwards. It is the donor who is in hospital a hell of a lot longer. They can be in a bed beside each other and the recipient is out of hospital and away the next day almost. The donor is the one that has a much longer hospital stay and a much more painful process. It is an incredibly important thing to consider. It is terribly important there is no money involved. We do not need to explain why that is, of course.

I think when families are faced with the decision, which may be made for them with an advanced care directive and a commitment, a documented desire to donate their organs should the circumstances arise, it is still an extraordinarily difficult time for the families of that person who is the potential donor. These are never easy times. I think the work that the teams do in supporting the families around that time is quite incredible. Most families who are sitting outside an ICU possibly have not even contemplated that, when the question needs to be asked. It is extraordinary difficult for those families. Having cared for some of these families many years ago now, they show bravery and courage at that time whilst grieving for their loved one who essentially has no hope of survival and is basically brain dead. It is a terribly difficult time.

The other thing that is important to remember is that despite people registering to be organ donors, the chances of that person dying in a circumstance where it is possible is still small. You have to be in a position where basically all your bodily functions ceased to the point that your organs can be saved, but you are effectively deceased. You need to be in a place where those functions can be maintained to keep perfusing your organs. People who die in car crashes in rural locations and that, particularly those who die at the scene, are very rarely able to be donors. There may be able to be some, like skin or corneas, but certainly not major organs.

Despite that, you never know. Some people think, 'I am old. I would not be a suitable donor' or 'I have had cancer, I would not be a suitable donor,' but, no, not necessarily. That is a matter for the health professionals to determine. It is never too late to register as an organ donor and I encourage people to have those conversations because without the conversations, we do not understand our family's wishes, our loved one's wishes, and we can be clear about what we want for our own bodies.

I also want to acknowledge the words of Bruce McDowell, the Chairperson of Donor Families Australia, as the Leader did, when he said:

We feel that it is a basic human right for families to be able to speak freely about their loved ones as part of their healing.

I absolutely agree with that. There are many things that help a family's grieving and healing. Some families may not wish to speak about it. That is their choice; but we should absolutely support and encourage those who want to and whom it is therapeutic for.

I also acknowledge, as the Leader has, that there is still a significant number, probably still around 1800, on the waitlist for transport in Australia. There are a lot of people out there who are very aware that they are possibly waiting for someone else to die, often in tragic and unexpected circumstances for them to have that chance of life. It is a really difficult thing and, for people who are on that waiting list it is a terribly difficult time. You feel like you cannot even go to the shop in case you get the call and miss it. Mobile phones have changed this a bit, but people don't go on holidays.

They do not go where they have no phone reception. They do not go too far away from a major centre, because sometimes you do not have a lot of notice. It is a very restrictive life for those persons and often involves some quite invasive treatments to try and maintain their health enough to actually be able to receive an organ transplant.

When my other son - not the one who was a bit cheeky, but this one is, too, probably - when he was doing his medical training he worked with a Royal flying Doctor Service and out of the Alfred and did some of the organ retrievals. He said it was a fascinating thing to see.

He was very lucky to be on the surgical team at the Alfred, who were involved in this. He was the one retrieving the organs and taking them to the hospital for transplants. You see both sides of it that way.

Just onto the other amendments, it makes sense to enable a paramedic and a medical practitioner to sign off on blood transfusion in those emergency situations where consent cannot be provided. These are highly skilled crews that go out in our Royal Flying Doctor Service and emergency retrieval teams and they do not do treatments that are not necessary. But it beggars belief that we could consider allowing a person or a child to die from the lack of a blood transfusion purely because there is no one who can consent for them.

I think all of us would respect that. I guess the only question there is for people who have a, religious usually, objection to blood transfusion. I assume the medical practitioner or the paramedic would be immune from prosecution if they did not know the child was of that religion.

I assume that is how it works now, but I just need to clarify that.

Mrs Hiscutt - Yes, that is the case.

Ms FORREST - There is another amendment enabling people under the age of 18 who are capable of making their own fully informed and voluntary decisions about their health to do so. Some of us would know some very capable young people who are much younger than 18. This is the way medical consent has been moving for some time now and, even in the family court and places like that, the child's will and preference should be considered and their consent sought whenever they are able to fully understand and provide it.

And there are some adults who are not really good at giving informed consent, maybe because they do not want to hear the news they are being given. And that is difficult. So, you have to make sure that, even for an adult, you explain things in a way that they can understand.

People who have worked in the medical field sometimes forget that all the acronyms we use in that profession are not understood by the average punter. You do need to be careful when you're expiring things to people.

I was gobsmacked that we still had this provision there, that the young people were treated differently if they were married, under the age of 18 or not. I am not sure what century that came out of but, anyway, I am glad we are getting rid of it, and probably we should not be encouraging people under 18 to be married anyway, quite frankly, and live their lives. Crikey.

There is a law against forcing young people to marry. Anyway, that is entirely appropriate. The other thing I wanted to make a brief mention of is the removal of breast milk to be treated with all the rigour of a thing like a blood transfusion.

Back 100 years ago, when I was a midwife working in the old Burnie Hospital - where Harvey Norman is now – we used to use the expressed breast milk from the other mums at times to support the little prems. Prem babies, unwell babies need colostrum. They absolutely do. The colostrum that a baby gets alters the gut for the rest of their life. Some people choose not to breastfeed, that is their decision. But even with those mums, we still encourage them to give them the colostrum because that can change the course of their health for their life. So if you have a mother who is really unwell herself and maybe the reason she has a prem baby is she has ended up in ICU herself or something like that.

These babies are separated from their mums to a degree. The mums can still go into the special care nursery or the neo-natal intensive care unit and see these babies, but it is vitally important these babies have access to breast milk. Some mums have an ample supply and some have a more challenged with their breast milk supply. My daughter, who is breastfeeding her second child at the moment, another friend of hers who also has a child about the same age, they will actually provide breast milk for each other if they get really stuck. In fact, her friend's husband tipped some breast milk down the drain by mistake. I know. I do not know how he is still living, but anyway, because she is back at work too, and this was to take to the child at daycare. And so my daughter provided some for that little fellow.

So that is not with screening that we would like to see, but these are, you know, good friends. They know what they have been up to. That is a choice they made. But when you are giving it to prem babies, mother's health is screened. The babies are assessed for the need for it. The milk is pasteurised. So, there are a whole heap of checks and balances around this. But people should never underestimate the importance of breast milk for newborn babies, the importance of colostrum in those first few days, even if it is only a few drops. But sometimes that is all it is for the first few days for some babies and mums. But it is liquid gold. It is precious and does change the baby's gut flora and can impact on their health into the future.

So I am pleased to say that, that is made much more streamlined. It still has all the checks and balances when you are giving in a medical situation like that to ensure you are not passing on infections and things like that and it is properly managed. But it was only on the review of the app that it became apparent that breast milk could be caught up in that. I do not know whether it absolutely would have been, but it is best to have some clarity around that. So all those amendments, they all make sense and they are sensible. It is good that sometimes these things get reviewed by turning over rock and thinking,' oh my gosh, we need to change that'. Anyway, I support the bill.