Case Study: Chatting to young people about organ donation
When was the last time you thought about organ donation?
I’m guessing for a lot of you the answer is ‘I don’t even know’ or ‘this week but only because I watched an episode of Grey’s Anatomy’.
For 1 in 3 Australians their answer would probably be ‘when I registered as an organ donor’ because that is how many are currently on the Australian Organ Donor Register.
For the 510 families who lost a loved one last year and the 1,402 Australians who received a life-changing transplant the answer to this question would mean more to them than most.
If you were to ask young Australians you’d most likely receive the first set of answers. Young Australians have the lowest rate of registrations as organ donors. Of Australians aged 18-24 only 8% are registered – 65% female, 35% male.
As someone in this age group, until recently I probably would’ve given a combination of the ‘I don’t know’ and ‘Grey’s Anatomy’ answers. Through my internship at Think HQ though, with one of our clients being the Federal Government’s Organ and Tissue Authority (OTA), it became a topic I gave more thought to.
There were a number of things I had no idea came into consideration when registering as an organ donor, including that my age group had the lowest registrations. I decided to look further into why this was.
While I can’t one hundred per cent say I didn’t believe at least one of the common misconceptions about organ donation, quite a few to me were surprising and even more so to see that a number of people in my age group believe them.
Organ donation isn’t much of an everyday topic of conversation or something that just comes up casually. So, I decided to bring the topic up with five of my friends to see what they knew, thought and believed about the process.
Annie, 24 Have you ever thought about being an organ donor?
I never really thought about it, I could be a donor when I’m dead. I think I probably wouldn’t otherwise; I’m kind of scared of going under and having an operation.
So obviously you’re not registered, do you think you would ever register?
No I’m not, I’m not really even sure how to.
You can actually do it online now. It takes less than a minute to register.
That seems too easy.
If you were to register, would you tell your family that you had?
Yeah because I feel like obviously they would need to know but also it would affect them more than me if I’m dead, like if they wanted to have an open casket or like if I leave my whole body to science maybe that wouldn’t be alright for them.
Ok so on the open casket topic, particularly young Australians have misconceptions about organ donation and the process. 1 in 3 Australians fear that organ donation leaves their body disfigured and this increases to nearly half of young Australians, but it’s actually the same as any other surgical procedure with clean incisions.
I mean they could probably do it where they take stuff out and just sew me back up.
It’s always done that way; it’s a separate thing to donate your whole body for science.
Yeah I didn’t really know that. I feel like there’s nowhere that’s like hey you should know about this unless you want to go and seek it out.
Back to the family involvement, it’s good that you would tell your family because regardless of whether you are registered, your family gives the actual consent for your organs to be donated.
Really? I feel like that’s so strange, like why even register then? And why would they say no if it doesn’t really affect anything?
It tends to be something a lot of people just don’t know. Particularly for young adults who are the least registered of all age groups, only 8% of 18-24 year olds are registered which is very low compared to all other age groups.
Yeah I just feel it’s one of those things like tax stuff I wish they could teach and educate you about in school and they just don’t.
Yeah and that’s maybe why there are misconceptions, to give you a stat - 8 in 10 young people are worried that their lifestyle means they couldn’t donate organs.
Oh yeah true, I didn’t even think about that. Smokers probably, and my liver is probably not up to scratch, but I don’t know, at the same time young people’s organs are probably better than someone who needs a transplant unless they’ve really messed up their lungs or something.
Would you be surprised to know that 35% of young adults think that if they were registered as an organ donor that doctors wouldn’t try as hard to save their life if they were in hospital?
Yeah that seems kind of ridiculous. I feel like they’d still do their best, it’s not like the doctors are like ‘hey we need organs’, like it’s not the black market. You’re still a person to save, just like the people who need organs.
Daniel, 24 Have you ever thought about organ donation?
Yes I have, I’m not registered but I’ve certainly thought about it and I probably should be because I think most people should be.
So if you were to register would you tell your family?
Ok well did you know that regardless of whether you’ve registered it’s always down to your family to give consent for your organs to be donated?
I think that rings a bell but it’s not something that I would have thought about.
So the reason I wanted to talk to you about this is because people in our age range, 18-24 year olds are the least registered and one of the reasons for this is because there are a lot of misconceptions. Would you be worried about donating because of your lifestyle choices? Like smoking or drinking?
Hmm no I don’t think so, I think most of my bits would still be pretty ok to donate.
Well, 7 in 10 Australians think you have to be the healthiest person to be a donor and this increases to 8 in 10 for young Australians.
Really? I mean we do go out and sometimes the next morning it feels like we have destroyed our bodies but I think all of us, or at least majority of people our age, would be pretty health humans.
Would you be surprised to know that nearly 1 in 3 Australians fear being an organ donor leaves their body mutilated, and this increases to nearly half of young adults?
It does surprise me but also I don’t know the process of how they do it all so I wouldn’t know how it’d all end up.
Ok so this one shocked me the most: 20% of Australians think that if you had an accident and had to go to hospital that doctors wouldn’t try as hard to save your life if you’re an organ donor and this increases to 35% for young adults.
No that sounds a bit silly. I mean they’re always going to be trying as hard as they can to save your life anyway - those people are silly.
How many people would you estimate are on the wait list for a donation at any given time?
Maybe like thousands, let’s say ten thousand people.
It’s 1,400. So not that extreme but it’s still a lot of people and for perspective, last year there was just over 500 deceased donors, which allowed for over 1,400 donations.
That’s so great.
The part many people don’t think about is the amount of hospital deaths that actually allow for donation. If you had to guess, what percentage of hospital deaths do you think allow for donation?
Maybe around 20%?
It’s only 1-2%.
Oh my god, ok. That’s so few!
Timmy, 23 Have you ever thought about whether you’d like to be an organ donor?
Yes I’d like to be.
Are you registered?
Do you think you’ll register yourself at some point? And if you did would you sit down with your family to also tell them?
I think so and yeah but only because they might kick up a fuss if I died really unexpectedly and then the doctor is like ‘oh also guess what, he’s an organ donor’ and they’d be like ‘what we didn’t know that?’
Do you know if any of your family members are organ donors?
I don’t but I imagine some of them are. I think my stepmother is but I don’t know about anyone else.
As an age group, young Australians are the least registered and one of the main reasons for this is because we just don’t know much about the process. Would you have any worries about donating because of lifestyle choices? Like drinking or smoking?
Probably my liver, so yes, but then they could just take a lung or something. But wait the more I think about it though, as much as maybe I go out and drink alcohol, I guess as far as my liver goes, it would still be relatively healthy as a young person. I guess that’d be more of an issue when it’s like people who have been drinking excessively for decades.
Is it surprising to know that nearly 1 in 3 Australians fear that organ and tissue donation leaves their body mutilated and disfigured, and that this increases to nearly half of all young adults?
They fear that? Oh that does surprise me, I mean they’re doing a clean incision -they’re not hacking people up.
What do you think about the fact that 20% of Australians fear that a doctor may not try as hard to save their life if they are registered as an organ donor, and this increases to 35% for young adults?
Oh my god. That is so stupid.
Lachlan, 23 Have you ever thought about organ donation?
Yes, I have.
Are you registered?
I’m not. I have that thing on my phone where it has, like, if you swipe left on your home screen it has your health record and I’ve said yes on that, but that’s not like officially on the register.
Ok so basically young adults are the least registered age group for organ donation and I wanted to see what you think about this topic because you’re a med student. What are your thoughts that nearly 1 in 3 Australians fear that organ donation will leave their body mutilated and this increases to nearly half of all young adults?
I guess you could call any sort of surgery mutilation but at the end of the procedure they try and put it back into a way that is suitable to the family, it’s not like they just leave you there open and pieces everywhere. I think they do it in a respectful way even if your life is over they still have respect for your body and how much your body means to your family, and their grief.
Another statistic I found interesting and want to get your thoughts on was 20% of all Australians fear that if they have an accident and are registered as a donor that doctors won’t try as hard to save their lives and this increases to 35% of young adults.
Really? I think doctors always have a duty of care for the patient that’s in front of them and they would never ever have an agenda to think that other patient’s lives are more valuable than the patient’s life that’s sitting in front of them. It’s a very tough call to make and not ever done lightly and it’s not ever one person as well, so I don’t think that sort of thing would ever be allowed to happen ethically. It’s so wrong on so many levels.
The other fact I found quite surprising was a lot of young people have worries about their ability to donate because of their lifestyle. 7 in 10 Australians think you have to be extremely healthy to donate and this increases to 8 in 10 young adults. So thinking, “oh I drink too much or smoke, so I couldn’t be a donor.”
I guess from my perspective young people have so much physiological reserve that if they’re still standing with the organs that they have, then they’re probably viable for donation to people who are at death’s door. I think for any organ donation, like you’re lucky to receive any organ that’s functional and it’s not always going to be fresh and untainted.
Do you know if any of your family members are donors?
I think they’re all like ‘ah yeah, that’s fine’ but I don’t think anyone has gone and registered.
Anne, 22 Have you ever thought about being an organ donor?
Are you registered?
Does your family know you’re registered?
Did you know that your family will be asked to confirm your donation?
Yeah, I remind them constantly that when I die, I give away my organs and they’re like ‘ughm please don’t talk about your death’ and I’m like ‘don’t go against my wishes’ and that’s why I’m registered and I’ve got the card.
Are you surprised that nearly 1 in 3 Australians fear that organ and tissue donation leaves the body mutilated and disfigured? And that this increases to nearly half of all young adults aged 18-29 years?
But you’re dead..? What does it matter, oh my god.
What do you think about the fact that 20% of Australians fear that doctors won’t try as hard to save their lives if they had an accident and end up in hospital and this increases to 35% for young adults?
Are you serious? That makes me sick to think that people think that.
Another large misconception is that 7 in 10 Australians believe you have to be extremely healthy to donate your organs (e.g. never smoked in your life) to be able to be a donor and this increases to 8 in 10 for young adults.
Really? 8 in 10! The body is more resilient than that like if it can recover from a hangover, your organs are still fine and working. If you end up being a donor and they see some of your organs are not suitable for use they just won’t use them but at least you tried and it didn’t go to waste. It’s literally the easiest thing you can ever do to save a life, just put your name down as yes, ‘I don’t need these anymore, you can have them.’
Do you know if any of your family want to be donors or are registered?
I have many opinions about this topic. I’ve tried to convince my parents to put themselves on the donor list and my dad is uncomfortable with the idea of other people having his organs. He thinks ‘that’s weird I don’t want that,’ and my mum says she doesn’t want to because she thinks her body should be whole when she dies for religious reasons, and I understand religious reasons. But for people who are like ‘I feel uncomfortable with someone else having my organs’, it’s like, are they really yours after you die? What are you going to do with them? I don’t get it.
Clearly organ donation is a topic many young Australians don’t talk about often and because of that don’t know as much about it as they could.
Although what was at least positive to take away from all these conversations I had was that for the most part whether they were registered or not, everyone I talked to wanted to, or was willing to be, an organ donor.
Only 1 out of the 5 of the friends I spoke to however was actually registered, with most not knowing how to do so or even realising you can now do it online.
It wasn’t the typical issue thrown about that millennials are ‘selfish’ or ‘lazy’ as many believe them to be. The intention is there, it’s more the fact that the message and information just hasn’t reached them.
That’s why the work Think HQ does with OTA and DonateLife Week and has been doing since 2012 is so important. They are helping to bridge that gap between intent and action; making people of all ages more aware of organ and tissue donation, to register their decision on the Australian Organ Donor Register and to share their decision with their family.
There’s 1,400 people on the organ transplant waiting list at any given time so the more registered, willing, potential donors the better.
To find out more information about organ and tissue donation and to register as a donor, visit register.donatelife.gov.au