00:05 Maddie: Hi, and welcome to the first episode of Talking Transplant, the podcast all about organ and tissue donation. My name is Maddie, and I'll be your host for today.

Austin Health acknowledges that this podcast is recorded on the lands of the Wurundjeri people of the Kulin Nation and pays respects to all Aboriginal and Torres Strait Islander nations. We also extend that respect to Aboriginal and Torres Strait Islander people listening today.

Today we are focusing on donation from the side that can sometimes be seen as a bit taboo to talk about, one that we may not have heard the side of and that’s the donor side.

I feel very lucky to have some special guests with me today. We have Associate Professor Helen Opdam, one of our senior Intensive Care Specialists at Austin Health and the National Medical Director at the Organ and Tissue Authority. Welcome Helen.

00:55 Helen: Hello.

00:57 Maddie: We also have Linda Miller, Linda and her family made the decision to donate their son Glenn’s organs last year during what would have been one of the hardest moments of their life. Welcome Linda.

01:06 Linda: Thank you for having me.

01:09 Maddie: To start, Helen, can you give us a bit of an understanding of where we currently are in donation and transplantation across Australia?

01:16 Helen: So we're doing pretty well. We could do better. We're always wanting to increase the rates of donation and transplantation because we want to help more Australians get access to transplantation. So things have improved a lot over the last decade.

There's been a national program to raise community awareness about the importance of donation and what it can mean to people through receiving a transplant.

And also a lot of work has been done across the health sector and particularly in hospitals to make sure that when someone can donate, that it's recognized and the families are well-supported through that process to make the right decision for their loved one and themselves.

Tremendous amount of effort. It's led to a doubling of the number of people who do donate each year after death and that means nearly twice as many people do receive life-saving or life-enhancing organ transplants each year.

02:18 Maddie: What do you think our main challenges are at the moment?

02:22 Helen: It's an incredibly complex process, so we're continually striving to improve all of the many aspects, many steps in the process to really try to optimize everything in the hospital system.

But really one of the biggest challenges is just community awareness of the importance of making a decision about donation, letting your family know, ideally registering your willingness to be a donor.

We would all want that opportunity to receive a transplant for ourselves or our loved one, but currently our consent rates when it comes to actually someone being a donor and consent occurring is only at around 60%.

So it's a big gap when we all want access to transplantation as a community. When you survey people, support for donations is a lot higher. And I think one of the biggest challenges is when actually comes to someone you love dying, usually under quite unexpected sudden circumstances, it can be really tough for people in that situation to make a decision to agree to donation, particularly if they don't know what their family member wanted.

03:34 Maddie: Can you put that into perspective with how many people are on the waiting list?

03:41 Helen: Yes. So currently, there's about 1800 people active on the waiting list. That means they're just waiting for that phone call to say, hopefully there's an organ available for them.

03:50 Maddie: And that's Australia-wide?

03:51 Helen: That's across Australia. And in addition to that 1800 people, there's another 14,000 people on dialysis, a proportion of whom could also potentially benefit from kidney transplantation, which is life-extending, but also much better quality of life than being on dialysis treatment several times a week hooked up to a machine.

04:16 Maddie: Without donation, there's no transplantation. In 2021, there were 624 organ donors. 421 came from people who tragically died. Glenn passed away last year at the age of 28, and he was able to donate both organs and tissue, transforming the lives of at least three people.

Linda, Glenn was your son, and you and your family made the decision on his behalf to donate. Can you tell us a little bit about Glenn? What was he like?

04:44 Linda: He was a caring, thoughtful young man who looked out for all of his family and friends. He enjoyed surfing, cooking, making a mess at my house. He didn't live with us at the time. He was a plumber, almost finishing his plumbing apprenticeship, and he was the fourth child. Just can't say enough that he just cared about others.

He would be the person that people would call if they needed a hand with anything, and he's he'd be right there. So, yes, he was very generous with his time and thoughtful towards everybody.

05:26 Maddie: And what was he like in the family? What was the role that he played?

05:32 Linda: The baby brother, he was the one that the big sisters dressed up when they wanted a baby to play with. He was like the late coming to everything person. You could sort of generally pick that we've got a family event coming up, "Glenn, make sure you're there on time."

But he generally made a last-minute decision to come to most things. Yeah, he was a bit of a scallywag and a larrikin. Lived life on the edge a bit.

06:01 Maddie: Helen I know that there are some concerns when it comes to organ donations. Some people might worry that doctors may not try as hard to save them if they're in hospital, or that if they're an organ donor automatically, people might take that as an opportunity to help someone else. How does donation work? And what would happen if we didn't have organ donors?

06:23 Helen: So it's really important to sort of break those myths. I think sometimes they could be a barrier to people thinking that, yes, I will be a donor.
So, firstly, as an intensive care specialist, I know myself, nurses or health care workers try utmost to save someone's life.

And it's only when it becomes clear that the person won't survive that donation becomes a consideration. I think for some people, too, they dismiss themselves as being suitable as a donor because they think they're too old. We've certainly had people in their 70s or 80s donate life-saving organs that have transformed the lives of others.

And certainly lifestyle factors, heavy smokers or drinkers, often used drugs or if they lived in the UK in the 80s, none of these prevent organ donation. There is such a need and the system is designed to improve the safety and make sure that the risk to people receiving organs is minimized and there's tests and things done at the time to help assess safety.

07:23 So we really want to encourage everyone to not rule themselves out and really just have that conversation with their family. It doesn't have to be a big, complex thing. It could come up over the dinner table.

And if they can sign the Australian organ donor register, it's very easy to do. You can go to donatelife.gov.au and there's a link, or you can do it through your myGov Medicare app, only takes a few minutes.

And I think for families, if it then comes to a point where they are in that circumstance, a very sad and overwhelming circumstance in hospital, and someone says to them, "What about donation?" Often just that brief conversation might have been over the dinner table, while watching a TV show or listening to a podcast and they'll say, "Yeah, I think that's something I would do."

It gives reassurance to the family that it's the right decision for the person they love and for themselves to proceed.

08:19 Maddie: And I think one thing that I certainly didn't realize until recently is that you almost have to pass away in a perfect storm, in a sense, to actually be able to donate. Not everyone is eligible, regardless of how healthy you are.

08:33 Helen: Look, I think that's one of the other big misconceptions, I think for many people, they think, "Well, not me, someone else can do it." Or if families are approached in that terrible situation, it's a major tragedy for them and their family can be overwhelming.

They think, "Oh, not us at this moment", sadly, it is that circumstance, though, where a decision is able to be made about donation to help someone else, someone to donate organs after death, to help others through transplantation, they do have to die under very particular circumstances.

It's generally dying in hospital, usually an intensive care unit having been on a ventilator, and there's only about 2% of the people who die in hospital each year who die under those circumstances. It's about 1300 people a year.

09:22 So it's not everyone who can donate. Sign up and be willing to be a donor, but chances are you're actually more likely to need a transplant in your lifetime than you are ever to die under the circumstances where you could be a donor.

09:39 Maddie: And so just to go through the process of what the donation side is actually like, what happens if you are a patient in intensive care and you're a family member of that patient, what unfolds?

09:52 Helen: The situations can all be a little bit different and so it depends on what the illness or the injury has been. I hope that health care workers explain the situation well to families simply and with compassion and care. Some families take some time to get their head around the fact that their family member, the person they love, has an illness or an injury that is not survivable.

When I think that's understood by everyone, sometime after that donation will be raised. Sometimes families raise donation and ideally we want there to be a donation specialist, usually a donation specialist nurse to be there part of that conversation because they have all of the information and can explain things in a way they've trained and they're very familiar with all of the processes.

So they're in the best circumstance rather than often the treating doctors to really help families know what is involved and to share information that families find most useful in then reaching a decision which is the right one for them and their family member.

11:00 If families then agree to donation, there is quite a process then of assessment, information gathering, sending some blood tests to do what's called tissue typing to match the person's organs that are going to be donated, the people who will best benefit.

But every scenario unfolds a little bit differently. For the donation process to then occur, that happens in an operating theater by very skilled surgeons, starting with incredible respect and dignity to the person.

There's so much activity behind the scenes. I think off the top of my head, there'll probably be 50 to a 100 people involved in any donation circumstance from the donation to the transplant. Because at the same time, the people who are going to receive those life saving organ transplants are being called, they're arriving at another hospital where they're going to receive their transplant.

11:55 There's people coming into labor laboratories to do the tissue type. It's very, very complex process and a lot of logistics behind the scenes.

12:04 Maddie: Yeah. And I think we're quite fortunate at Austin Health that we do have three Donate Life nurses who work with families like yourself, Linda, throughout this process, looking back to the day that Glenn died, and I know that this is probably going to be hard to talk about, but what do you remember about that day? Because Glenn's death was unexpected.

12:23 Linda: We had a little bit of a journey beforehand, so we had probably three days where they were testing him and eventually told us that he wasn't going to be able to come back.

So we were aware of his wishes and we wanted to honor them for him. So we actually approached our ICU specialists and let them know that he was an organ donor. He was on the registry, and the look on their faces was like, I'm not going to say joy, but they were so relieved to know that they may not have had to have broached that subject with us. And Glenn was able to donate quite a lot.

13:13 Maddie: Are you comfortable in sharing what organs he was able to donate?

13:13 Linda: Yeah, he was able to donate his heart and his two kidneys. They all went to recipients because he was like, six foot three, his lungs were not able to be given to anyone because they wouldn't fit. So they went to the Austin Hospital for further research.

He then went to, his corneas were donated and some of his tissue and possibly tendons as well, I believe. Yeah. So he did a wonderful lot of giving on that day. The support, the nurse, the Donate Life nurses are amazing. The after care has been amazing that we have our own care nurse that calls and checks on us all the time.

So it's been a lot to process. I know there's a lot of paperwork and things that we needed to get through, but in us knowing that Glenn was a donor, we were able to be prepared for that too.

14:16 Maddie: Does knowing that he was able to help multiple people help with the grieving process?

14:22 Linda: It sort of gives us a bit of a silver lining to what we've been through and we can just be not happy, but feel a bit of relief that he was able to do what he did and give as much as he did. And being aware of that just helped us through that journey as well.

14:43 Maddie: Making the decision to donate a loved one's tissues and organs, it's a really hard thing to think about in advance. Glenn, however, did make it known to you, Linda, about his wish to be an organ donor. How did that conversation come up?

14:59 Linda: Probably just in the way that Glenn did everything. He just come out and he said, "Mum, I've registered to be an organ donor." And I said, "Well, that's wonderful because I am too." And I think that the more people that can do that, it's just a positive feeling.

You don't think that you're going to actually go, pass away. It's just a fact of life that you've got something that someone else can use maybe after you're gone and hopefully you can...

15:26 Maddie: Helen, one thing that you said before is talking about death. It's not an easy conversation to have. It's not something that often comes up naturally in conversations. For those listening who might not have had the conversation yet with their family, do you have any tips or tricks on how they could maybe start that conversation?

15:43 Helen: I think the registry is a good way of starting that conversation. As Linda said, sometimes people will want to share the fact that they have registered, and if it's come up in conversation on social media or in other media streams, I think just saying you watch something or saw something and then just sharing your own view, it doesn't have to be a big, formal sort of discussion.

The family are the people who are always there at the end of someone's life in hospital, when donation is possible, it's great to be registered, but it's not vital. And it's really important, I think, to have the conversation with your family because they are the ultimate decision makers on your behalf.

Some people get upset. They say, "Well, if I'm registered, I don't want anyone to overturn my wish." Well, families generally don't, because people, just like Linda said, they want to honor the wish of the person that they love.

So having that very quick conversation, or it can be a long conversation, any sort of conversation you like, but just mentioning that to your family gives the family assurance that they're doing the right thing by you when you can't speak for yourself in that circumstance.

16:56 Maddie: And I think that's a really important point, because I think there is a misconception, and again, I've said this a couple of times, but I did not realize this, that just because you've signed up to be an organ donor, that doesn't mean that that will automatically happen.

There's a stat, when a family is unaware of their family members' wishes, only four out of ten families agree to donate, in comparison to nine out of ten if that particular family member's wishes are known.