April 8, 2025 • 29 mins
Let’s talk about death, baby
From breaking the stigma to understanding the conversations we need to have before we die, beloved broadcaster and advocate Andrew Denton and clinical psychologist Dr Kerrie Noonan dissect everything we should and shouldn’t say about death.
About the episode – brought to you by Australian Seniors.
Join James Valentine for the sixth season of Life’s Booming: Dying to Know, our most unflinching yet. We’ll have the conversations that are hardest to have, ask the questions that are easy to ignore, and hear stories that will make you think differently about the one thing we’re all guaranteed to experience: Death.
Featuring interviews with famous faces as well as experts in the space, we uncover what they know about what we can expect. There are hard truths, surprising discoveries, tears and even laughs. Nothing about death is off the table.
Andrew Denton is renowned as a producer, comedian and Gold Logie-nominated TV presenter, but for the past decade he has been devoted to a very personal cause. He is the founder of Go Gentle Australia, a charity advocating for better end of life choices that was instrumental in passing voluntary assisted dying (VAD) laws across Australia.
Senior clinical psychologist Dr Kerrie Noonan is director of the Death Literacy Institute; director of research, Western NSW Local Health District; and adjunct Associate Professor, Public Health Palliative Care Unit, La Trobe University. For the past 25 years she has been working to create a more death literate society, one where people and communities have the practical know-how needed to plan well and respond to dying, death and grief.
If you have any thoughts or questions and want to share your story to Life’s Booming, send us a voice note – lifesbooming@seniors.com.au
Watch Life’s Booming on YouTube
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For more information visit seniors.com.au/podcast
Produced by Medium Rare Content Agency, in conjunction with Ampel
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Disclaimer: Please be advised that this episode contains discussions about death, which may be triggering or upsetting for some listeners. Listener discretion is advised.
If you are struggling with the loss of a loved one, please know that you are not alone and there are resources available. For additional support please contact Lifeline on 131 114 or Beyond Blue on 1300 224 636.
TRANSCRIPT:
James: Hello, and welcome to Life's Booming. I'm James Valentine, and this season, we're talking about death. Or, on this episode, why we don't talk about it enough. Death is really easy to talk about, but avoiding the subject just makes things even harder. From breaking the stigma to understanding the conversations we must have before we die, I'll be dissecting everything we should and shouldn't say about death with
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:08):
Hello, and welcome to Live Spooming. I'm James Valentine and
this season we're talking about death or on this episode,
why we don't talk about it enough? Death is really
easy to talk about, but avoiding the subject just makes
things even harder, from breaking the stigma to understanding the
conversations we must have before we die. I'll be dissecting
(00:28):
everything we should and shouldn't say about death with two
fascinating minds. Andrew Denton is the founder of Go Gentle Australia,
a charity advocating for better end of life choices. But
you probably know him better from so many shows on
our TV and Doctor Kerry Noonan is a senior clinical
psychologist and social researcher determined to increase our death literacy. Kerry, Andrew,
(00:51):
thanks so much for joining us. Did you know one another?
Speaker 2 (00:54):
Yes, we do r way.
Speaker 3 (00:56):
We've had a few conversations about death, dying, all those things.
Speaker 1 (01:01):
How did you learn about death? Like when did you
and who did you go to talk to? When did
you start thinking about it?
Speaker 2 (01:08):
Well?
Speaker 3 (01:08):
I think you learn about the way everybody does, which
as you experience it and the first time it happened
to me, I made a documentary about teenagers with cancer canteen.
Speaker 2 (01:17):
That's a poor group.
Speaker 3 (01:18):
And one of those young men died and his parents
very generously invited me to visit him as he was dying,
and that was the first time I actually saw what
death can be and it was it was very hard
to see. And then watching my own father die obviously
was a profound moment for me because that was an
unhappy death. But how I've learned about it since is
(01:43):
I imagine a bit like Kerry. I've had thousands of
hours of conversations with people who are dying and their
families and their careers, and I've learned so much about death.
Speaker 2 (01:52):
I feel I've mastered it and can move on. Yah.
Speaker 1 (01:55):
Sure, that's right. And is this what you mean by
death literacy that that, in some ways we just need
to be talking about it more.
Speaker 4 (02:03):
It's talking about it, that's one aspect, but it's kind
of developing you know how and being able to put
that know how into practice. So you can maybe talk
about maybe have some competency in terms of talking or
maybe doing one element related to death and dying, But
when you put it into practice, that's when death literacy
(02:26):
kind of really comes to life. It kind of sits.
Some of the research we've done recently, it's evident that
death literacy sits in networks in between people, within people,
in communities. So it's not just about individuals.
Speaker 1 (02:42):
I suppose I'm wondering about it. What point we might
have this or there'd be a difference in death literacy
with twenty year olds and there would be with eighty
year olds.
Speaker 4 (02:48):
Right, yeah, Yes, experience changes your death literacy. That's probably
the strongest predictor. So we started this research looking at
networks of care and how people kind of come together.
And so where we're at now is we're looking at
what are the predictors and what are the things that
we understand so that we can understand more about how
(03:08):
to make more death literacy. I guess. So an example
that to question, well, I can give it real example
when when my mum was in hospital, were we needed
someone to help us to move mum from the hospital
to home because we wanted to take her home and
(03:30):
we couldn't get the health system or the medical system
to do that. So I put an email out, a
text message out to my friends who happened to work
in the death space, and within an hour, we had someone.
Within two hours, mum was home and so that took
you know, that set off a little chain of conversations, emails, texts,
(03:50):
and while I was doing that, my brother was getting
the medication sorted and other things sorted for my mom.
So we really we utilized to bring my mom home,
like every bit of knowledge and our networks to do that.
Speaker 1 (04:07):
But you were at the center of you know, you
study this, you're an advocate for it, and so you're
at the center. You would have a network. I mean,
I don't know that I've got the same network. I
could put it out to my friends and they go,
we could bring white like I don't know, but that
we don't know that they'd be that practical.
Speaker 4 (04:25):
But that's actually helpful too. You need your friends to
turn up with wine and bread and croissants and whatever comforts.
So we found that younger people, for example, So we've
done two kind of national studies just to kind of
demonstrate your point about younger people. Between twenty nineteen pre
(04:45):
COVID and twenty twenty three. We looked at the population
and we looked at death literacy and how it changed,
and we found that volunteers is a dying and COVID
had an impact on people's death literacy, particularly for the
younger people. Anyone who's experienced to death, anyone who's been
through loss has higher deth literacy than people who haven't.
(05:07):
And so there's lots of things that contribute to that.
But COVID, I think we're still kind of looking at
the data, but certainly voluntary assisted dying because of the
way that you need to kind of have conversations, You
need to actually reach out to your networks, you need
to talk to doctors. You know, there are actually lots
of interactions in that that really stretch your skills and
(05:30):
your understanding.
Speaker 1 (05:32):
Previous generation. It's only a few generations back when death
was very present in our life. The conversation about voluntary
sister dying has perhaps allowed us to have that conversation again.
Have you seen that?
Speaker 2 (05:42):
Yeah, I think that's right.
Speaker 3 (05:43):
I mean, there's a lovely wishy observation that in Victorian
times they talked about death all the time and never
about sex, and today the other way around, you know,
and it's not that many generations ago where the body
would lie in the house and they'd be a viewing
in the house, and so it was. It was a
more human thing in the way Carr is describing her
(06:03):
friends helping her mother come home.
Speaker 2 (06:05):
That's a communal and human thing.
Speaker 3 (06:08):
And when I talk about voluntarists dying, I must and
I want to bracket it with palliative care because really,
despite the fact politically they were oppositional during the legislative debate,
they're very much on the same end of the spectrum,
which is we're all going to die. And the concept
of palliative care, which is also the same idea of
voluntary sist to dying, is not let's get you to
(06:30):
the dying bit, but how do you live as well
as you can while you were dying?
Speaker 2 (06:34):
And that dying.
Speaker 3 (06:35):
Process could be very short, or it could be very long.
It could be several years. Usually you can't be really clear.
So the whole point, as Kerry said, about voluntarists dying
and palliative care, is you talk about these things and interestingly,
I think there's a paralysis around death. And you know,
(06:55):
you said, well, my friends wouldn't know what to do.
They'd bring wine. As Kerry said, that's no bad thing.
But if you put out a call to your friends,
say I need to move my fridge. Somebody's going to say,
I've got a ute, your need perhaps to leave hospital
and go home. That's the same question. It's just a
human question, which is I need help. And not only
(07:17):
do we get paralyzed in the face of death and
assume that the experts have the answers, but the experts
often get paralyzed in the face of death. They don't
know how to have those conversations either. So one of
the things that voluntarists are dying absolutely has done. And
there was a geriatrician in Victoria who said to me
(07:37):
he was ashamed to admit that voluntarists are dying and
made him understand how limited his practice had been, and
that he had subconsciously only be asking questions of patients
that he had an answer to, how is your pain?
I can treat your pain? What are your symptoms? I
might be able to treat your symptoms. Whereas what he
asks now is how do you feel? What is life
(07:58):
like for you? That's a much more sick question. What
is it that you need that if we can't help
you with, maybe someone else can help you with. So
I think it's about transcending that paralysis in the face
of death, which is natural. But the greater group that
you can talk with it.
Speaker 2 (08:15):
About the better.
Speaker 3 (08:16):
I still remember a woman I met several years ago
and she said to me, from the moment her husband
was diagnosed with cancer to the moment he died, he
refused to talk about it, and it was like a
sliver of ice stuck in her heart because she was frozen.
Speaker 2 (08:34):
And that too, and.
Speaker 4 (08:36):
I think what we found in a lot of our
research too, Andrew, was that cares were often had massive
networks that the person who was dying didn't know about
as well. So I think that's that's the other thing
about some of these conversations is that once you know
(08:57):
that you've got community who's up for the conversation or
up for whatever around you, that a lot of carers
are can have that access to other people.
Speaker 1 (09:08):
And you mean the person dying doesn't know because they
don't ask. Unless they're talking about it, then no one
thinks to bring it forward. Does that what you mean?
Speaker 2 (09:14):
Yeah?
Speaker 4 (09:14):
I mean I think what happens in that situation is
a care can be really become quite isolated. Like the
dying person, they don't want to talk about it. There
actually are still practical things to organize. There are still things,
where are the passwords? How do you get into the
bank account? What bills need pay?
Speaker 3 (09:33):
I'm trying that with my life all the time, and
she's not even dying.
Speaker 4 (09:38):
They continue, but you don't get to have the conversation
with the person.
Speaker 2 (09:41):
Actually.
Speaker 3 (09:42):
Geraldine Brooks a beautiful author. Her husband Tony, who is
a friend. He died very suddenly, drop it dead in
the street, and he was young, in his early sixties,
and she's just written a book about this couple moreial days,
about that whole experience. And that's the strong piece of
practical advising HIMS, which is prepare for your death by
(10:05):
helping others like leave the passwords, explain how these things work.
The best things I've learned about the idea of preparing
for your death and thinking about death, actually I'm pretty
sure came from some of your literature, Kerry, which was
the idea of an emotional will. And an emotional will
is not about to you, James, I leave my ute.
(10:28):
It's actually about to you, James. I going to leave
my favorite city in the world, Limerick in Ireland, and
here's the money for you to go there, or to you, James,
I'm going to leave these five songs which mean something
to me. It's actually about, well, this poem, it's about
gifting something of spiritual life value as opposed to an object.
Speaker 1 (10:49):
Yeah, following the legislation in the South Wales, now pretty
much in every state Andrew where what do you see now?
What do you see in our society?
Speaker 5 (11:00):
Now?
Speaker 1 (11:00):
What do you see happening.
Speaker 3 (11:03):
To me? The big question is not so much how
individual families or individuals respond, even though it's very important
to me. The big conversation is within the medical professions.
And I don't actually say that critically because we're all
equally struggling with the concept of the ABYSS. And I
think it is an acknowledged problem in health care, of
(11:27):
futile care at the end of life. It's giving a
ninety year older hip replacement, for example, just overtreating because
of the I've heard it described as doctor as hero.
You know, we give doctors quite reasonably a special place
in our society because we are special things of them.
But part of that training is we must win, we
(11:50):
must treat. When I was first told this by a
doctor in Oregon when I went there, when they said, oh,
we see death as a defeat. I actually laughed. I
thought they were Joe, it's you.
Speaker 1 (12:03):
Know, you can't win. He turns up with that side.
Speaker 3 (12:05):
But at that so, I think there's a much broader
conversation about what is dying and how do we have
that conversation with people who are dying?
Speaker 2 (12:13):
And I think.
Speaker 1 (12:15):
I suppose I just thought I asked that because I
have had a couple of conversations recently with people who
have who were a relative or parent has gone through
voltory assisted dying, yes, And what I noticed was the
way they talked about it in a sense wasn't much
different too. Oh we went to Europe, you know, we
had a nice trip, like it was very normal the
way they said it. They went, I was at my
uncle's death yesterday.
Speaker 3 (12:36):
It can be, you know, dying effects different people differently.
There are people that have gone through the voluntarists dying
process who totally support it and are very glad it's there,
but still found the experience traumatic. It's not a silver bullet.
Speaker 2 (12:48):
It doesn't.
Speaker 3 (12:49):
It's merciful and it's peaceful, but it doesn't It certainly
doesn't remove grief, and it doesn't remove for many people
our reality of dying. We hear many, many testimonies of
families deeply grateful for the way in which they are
able to save fair Well. And I think that's a
very important part of voluntary sist dying, a genuine ability
(13:11):
to save farewell. But people are different. There's one man
that insisted who used voluntarists as dying, and insisted that
he be only with his doctor. And the reason he gave,
which I find both beautiful and heartbreaking, he said, I
don't want the love of my family holding me back.
So you know, I always maintain when I talk about this, that's.
Speaker 1 (13:34):
Not the same thing I did, the same thing.
Speaker 3 (13:35):
It's like, I know, you know, huge Whenever I've talked
about this, I've always maintained, none of us know how
are dying will be.
Speaker 2 (13:43):
All we know is that it will be hours and
hours alone.
Speaker 3 (13:46):
And I think that's why I struggle with that philosophy
that somehow or other that are dying is about society
at large, or about some universal rule that we might
be breaking if we don't do it the right way.
Speaker 1 (14:04):
Kerrie, you know, I sort of want to acknowledge that
you've been through a death quite recently that you or
your mother died only a few weeks ago. As we're
having this conversation as someone who's then spent their life
studying this area and thinking about this area, what have
you learned from the death of your mother?
Speaker 4 (14:21):
It looks similar to what Andrew said before about his
colleague the doctor, like, well, I went straight to the
practical things, didn't. I like, it's a griefs a kick
in the guts, let's face it, and knocks you on you.
Speaker 1 (14:35):
But we are very practical in those first weeks the
moment of death.
Speaker 4 (14:39):
So afterwards, just the other day, when we dropped my
daughter off to UNI, I went to text my mum
as I would usually do, and text her the photo
of her in her dawn, and I think this is
you know. I was really glad of my experience because
(15:01):
I just sat there and cried for about five minutes. Actually,
I just needed to blubberh and cry. I could have
sucked it up, we could have just you know, driven on,
but actually it was really helpful just to really deeply
acknowledge that moment. That was the first time that I'd
experienced that real sense of wanting to communicate with her,
(15:24):
So I.
Speaker 2 (15:24):
Hope it won't be the last time. You know, I
don't cry.
Speaker 4 (15:28):
No, it won't fag you. It won't be But when
she died, because of the work that we had done,
I didn't cry initially, And this is this individual kind
of experience of going through this. I didn't immediately cry.
I felt intensely for my mum, and so I was
just reflecting on that. I was like, wow, I'm not crying,
(15:49):
and I was like and so there was that. The
other thing that is on my mind is that it
took and I see you doctor on the day that mum.
So Mum had three met calls. And if you don't
know what a met call is and you're listening to this,
this is where every registrar, every emergency person on call
(16:15):
runs to the bed of the person who is who's
been called you know, who's crushing. And she had three
of those. And by the end, I'm glad I wasn't
there because I hear that Mum was very distressed and
I took an ICU doctor to sit down with her
(16:35):
and go, what do you want, Maureen, and Mum said
I'm done. And so it didn't matter that I had
done that with the doctors multiple times, or that she
had an advanced care directive clearly stating do not give
me treatment that will prolong my life. It didn't matter
(17:02):
that all of those things were in place. What mattered
was that I see you doctor who absolutely compassionately just
stopped everything and talked to my mum. And it's a
pretty brave thing when your heart is failing and other
things are happening in your body to say no more,
(17:22):
I'm done, because that does that's a decision about you
only have a certain amount of time left in your life. Then,
so that doctor changed the course of my mum's dying.
And yeah, I'll never forget that. And then the compassion
(17:43):
at which she called me to talk with me about
what mum had decided, and the checking difference. The other
thing that I found, the difference between a doctor with
really like person centered communication skills and someone who's focused
on getting the job done. They ring and say, hey,
(18:06):
I'm caring for your mum, I'm caring for a person.
What do you understand about what's happening? And every time
they every time they did that, it just gave me
an opportunity. Even though I know this gig and I've
had calls like that with goo call. I've talked a
(18:27):
hundred times on the other side of that conversation with people,
but it just made me realize that just incredible, that empathy.
You feel it in your bones on a whole other
level when someone is truly going tell me, tell me
your story, tell me your bit. The other part was
(18:49):
no one asked me or my brother about about our experience,
our previous experiences, and who we were and what we
did and who were these children taking their mum home.
My brother's a nurse, you know, I voke did palliative
(19:11):
care for a million years, and it was a really
interesting thing having to like, I just wanted someone to go, hey,
have you done this before? And maybe I'm being a
bit biased there, because that's something that because I've got
a death literacy lens over things, and I'm always interested in, Hey,
(19:32):
what have you done before?
Speaker 2 (19:33):
Hey?
Speaker 4 (19:34):
What experiences do you want to bring to this one?
What do you know about what you're facing? What do
you want to know about next? They were all the
questions that I would be asking if I was working
with someone. I really wanted someone to ask me.
Speaker 3 (19:47):
In a palliative care setting, you've probably been asked those
questions you would hope, but I hope some general hospital
maybe not. I think that speaks to two things what
we're talking about, which is a paralysis in the face
of death and a sense of we just treat, we treat,
we treat, this is what we do. Everybody's terrified of
being accused somehow of not having done enough. So I
(20:08):
think there's that and the doctor, the ICU doctor you
described that strikes me as a perfect piece of medicine.
And it absolutely accords with what a beautiful nurse said
to me in South Australia some years ago. She was
very emotional, she was recording a piece for us about
why they should be voluntari as dying. It was always
(20:30):
instructive to me that the ones that really advocated for
it with the nurses, because they're the ones that see
the suffering. And she just said, why can't we do
the right thing human to human? And that's why I
see this as a multi generational discussion within the health profession.
It's not the people in the health profession. Humans don't
(20:50):
get that, but that's not how they're trained. But I
also think it speaks to depressions on the health system too.
In the same way as we're talking about age care.
Even though we have a much healthier health system than
say America, it's still pressured. And we know we hear
stories from hospitals all the time of resources that have
built but not used, or resources that are used but
(21:11):
are stretched beyond reason. And so I think it's reflecting
all those things.
Speaker 4 (21:16):
Yeah, there was at times, and I think sometimes we
don't talk about this enough. Is paternalism in healthcare?
Speaker 3 (21:22):
Can I explain that?
Speaker 2 (21:28):
Oh, you we covered that career, please do go on?
Speaker 5 (21:31):
Sorry, Oh there's a lived experience, Okay that Yeah, like paternalism,
we just don't have a critical kind of conversation about
paternalism in healthcare.
Speaker 4 (21:47):
And you know, there's that difference between really great care
and then but if you just kind of tip it
a little further into do you really want to do that?
Don't you want to be the daughter not the care?
You know, like there are there were kind of particular
things that happen in healthcare that that we don't We
(22:12):
aren't critical enough, is what I'm saying. I don't know
what the answer is, but I would like the system
to be more critical about about some of those things
that perhaps they take for granted a little and look,
sometimes it would be maybe permission for a family to
kind of be the daughter.
Speaker 1 (22:30):
Well, even in my experience and my cancer experience of
the last year or so, I've now done several talks
at doctors conferences and things like that, and what sort
of strikes me as funny about it as I go,
we're thinking of taking interest in the patients perspective. Perhaps
you'd like to come and talk about them patients perspective?
Speaker 2 (22:48):
Is this new?
Speaker 4 (22:48):
You know?
Speaker 3 (22:50):
I went on you a about the I D quite
early in my advocacy, which was a terrifying experience, by
the way, and there was another fairly prominent doctor who
was strongly in opposition, and I completed what I had
to say by basically saying, you know, doctors, it's time
to listen to your patients. And this doctor was a
very good writer, wrote this exclorating piece in a magazine afterwards,
(23:14):
just accusing me of being patronizing towards doctors. I'm thinking
that's patronizing. Yeah, I mean, the worst example I know
of this there was a former AMA official and they
held a debate on this internally in twenty sixteen that
I had a link to, and so I watched it,
and he was a geriatrician and a senior doctor, and
(23:39):
somebody on the other side of the debate because he
was opposed, had put to him that there's a great
public support for this, and he said, and I'm quoting
pretty close to obating, he said, that's why we're paid
two hundred thousand dollars a year. There cannot be a
more you focus experience than you're dying. I don't care
what your religion tells you in the end, only you
(24:01):
were going there when it happens.
Speaker 1 (24:03):
You've given Is it a decade now to this have
you been?
Speaker 3 (24:08):
I think you know there are times that I'm sure
Kerry would agree with this. There are times I think,
you know, I've had enough to thank you very much,
But I would have to say it's been the most
brilliant second act for me after show business. Far more
meaningful to me. The correspondence I've had in the conversations
(24:31):
I've had have been so privileged, and the gratitude that
we as an organization go Gentle receive from people whose
families had the optimum voluntarist dying is immense. And so yes,
I am glad and certainly, I view this as the
(24:52):
real work that I've done, not whatever I may have
done in television. Perhaps if I want a logo, i'd
feel differently about that.
Speaker 2 (24:58):
I think you've peaked a blaw uph k, yeah, I
think so. It was all downhill after that first year. Exactly.
Speaker 1 (25:04):
Yeah, Well, I almost feel like I need to go
and have a good cry. It's been a beautiful discussion.
Thank you so much for sharing it with us here
on life.
Speaker 2 (25:13):
Can I ask you a question?
Speaker 3 (25:14):
Yeah, you just wound out you're getting tierty.
Speaker 1 (25:17):
Yeah, what are you? I'm not entirely clear. I think
I'm moved by Kerry and sort of wanting to experience
your grief in some ways deal with that. Or I
feel like I think I'm feeling that you holding you
in sort of that you know, we need to sort
of let that, let that go a bit. So, Yeah,
(25:38):
it's interesting. I think I'm moved by your work as well. Look,
we have a funny connection over many decades, and to
observe you go through do you know, to see you
transformed doing that work's been quite extraordinary. And I'll probably
just contemplating my own.
Speaker 3 (25:56):
And exactly, James, during the height of COVID. Quite unexpectedly,
a very good friend of mine ran me for Victoria,
and we knew his wife had pancreatic cancer, which is
obviously a very tough diagnosis, and then he said, she's
(26:20):
chosen VAD and she's going to die on this day.
And despite all the thousands of hours spent in that
debate to get that law passed, the Victoria which was
the first one in Australia, and it was an absolute
brutal knife fighter her battle to get that law passed.
For some reason, it had never occurred to me that
somebody who I knew and loved was going to use
(26:41):
this law. And I remember, despite everything I knew about it,
on the day, Jennifer and I we got out whiskey glasses,
we poured a whiskey, we lit a candle. But I
remember thinking as the clock ticked down to the moment
felt very unreal to me. But the strong emotion that
(27:03):
I felt at the knowledge in the moment of her
dying was not that she had died. It was actually
about just the richness of life. Oh my god, life
is so rich, and that's what I felt. I just felt, Wow, life.
Speaker 4 (27:20):
I think that is what you say there is so
deeply important because one of the reluctances around talking about
death and dying is not being able to maybe lean
into some of that feeling around that richness of life.
When we were going through photo albums, there were photos
(27:43):
there that, you know, that we'd never really taken notice
of before. How we wanted to know about them? Now
are these people? Where are they now? And it does
connect you to life very profound way and all of
(28:03):
the messiness of that. So and that's I think only
a great thing. Watching my children twenty two and seventeen
be with their grandma. We did a very a simple thing,
put a comb a brush on the end of her bed.
And Mum used to love having a hair brushed, and
(28:27):
we just said to the kids, just brush her hair,
maybe you won't gorgeous. And so that just very simple
action just then gave them something to be with her
while she was dying. And yeah, and my children did
that many times while she was dying. And and that's
(28:49):
when we would sit and talk about what we did
with nanny and things, and we you know, so it's
worth leaning into. I guess I see, it's worth getting
the whiskey out. Having a think about about about these
things and reflecting in on it and how and what
(29:15):
it means to you and what you want to do.
Speaker 3 (29:19):
Thank you, Thanks, Thanks James, come on, let's haid that
out coming here exactly very good.
Speaker 1 (29:29):
That was a beautiful moment. Thank you, Thank you. Quoting
thanks to our guests Andrew Denton and doctor Kerry Noonan.
You've been listening to Season six of Life's Booming Dying
to Know, brought to you by Australian Seniors. Please leave
a review or tell someone about it. Head to seniors
dot com dot au Slash podcast for more episodes. W
(29:50):
Your Life Be Booming. I'm James Valentine.
Hello, and welcome to Live Spooming. I'm James Valentine and
this season we're talking about death or on this episode,
why we don't talk about it enough? Death is really
easy to talk about, but avoiding the subject just makes
things even harder, from breaking the stigma to understanding the
conversations we must have before we die. I'll be dissecting
(00:28):
everything we should and shouldn't say about death with two
fascinating minds. Andrew Denton is the founder of Go Gentle Australia,
a charity advocating for better end of life choices. But
you probably know him better from so many shows on
our TV and Doctor Kerry Noonan is a senior clinical
psychologist and social researcher determined to increase our death literacy. Kerry, Andrew,
(00:51):
thanks so much for joining us. Did you know one another?
Speaker 2 (00:54):
Yes, we do r way.
Speaker 3 (00:56):
We've had a few conversations about death, dying, all those things.
Speaker 1 (01:01):
How did you learn about death? Like when did you
and who did you go to talk to? When did
you start thinking about it?
Speaker 2 (01:08):
Well?
Speaker 3 (01:08):
I think you learn about the way everybody does, which
as you experience it and the first time it happened
to me, I made a documentary about teenagers with cancer canteen.
Speaker 2 (01:17):
That's a poor group.
Speaker 3 (01:18):
And one of those young men died and his parents
very generously invited me to visit him as he was dying,
and that was the first time I actually saw what
death can be and it was it was very hard
to see. And then watching my own father die obviously
was a profound moment for me because that was an
unhappy death. But how I've learned about it since is
(01:43):
I imagine a bit like Kerry. I've had thousands of
hours of conversations with people who are dying and their
families and their careers, and I've learned so much about death.
Speaker 2 (01:52):
I feel I've mastered it and can move on. Yah.
Speaker 1 (01:55):
Sure, that's right. And is this what you mean by
death literacy that that, in some ways we just need
to be talking about it more.
Speaker 4 (02:03):
It's talking about it, that's one aspect, but it's kind
of developing you know how and being able to put
that know how into practice. So you can maybe talk
about maybe have some competency in terms of talking or
maybe doing one element related to death and dying, But
when you put it into practice, that's when death literacy
(02:26):
kind of really comes to life. It kind of sits.
Some of the research we've done recently, it's evident that
death literacy sits in networks in between people, within people,
in communities. So it's not just about individuals.
Speaker 1 (02:42):
I suppose I'm wondering about it. What point we might
have this or there'd be a difference in death literacy
with twenty year olds and there would be with eighty
year olds.
Speaker 4 (02:48):
Right, yeah, Yes, experience changes your death literacy. That's probably
the strongest predictor. So we started this research looking at
networks of care and how people kind of come together.
And so where we're at now is we're looking at
what are the predictors and what are the things that
we understand so that we can understand more about how
(03:08):
to make more death literacy. I guess. So an example
that to question, well, I can give it real example
when when my mum was in hospital, were we needed
someone to help us to move mum from the hospital
to home because we wanted to take her home and
(03:30):
we couldn't get the health system or the medical system
to do that. So I put an email out, a
text message out to my friends who happened to work
in the death space, and within an hour, we had someone.
Within two hours, mum was home and so that took
you know, that set off a little chain of conversations, emails, texts,
(03:50):
and while I was doing that, my brother was getting
the medication sorted and other things sorted for my mom.
So we really we utilized to bring my mom home,
like every bit of knowledge and our networks to do that.
Speaker 1 (04:07):
But you were at the center of you know, you
study this, you're an advocate for it, and so you're
at the center. You would have a network. I mean,
I don't know that I've got the same network. I
could put it out to my friends and they go,
we could bring white like I don't know, but that
we don't know that they'd be that practical.
Speaker 4 (04:25):
But that's actually helpful too. You need your friends to
turn up with wine and bread and croissants and whatever comforts.
So we found that younger people, for example, So we've
done two kind of national studies just to kind of
demonstrate your point about younger people. Between twenty nineteen pre
(04:45):
COVID and twenty twenty three. We looked at the population
and we looked at death literacy and how it changed,
and we found that volunteers is a dying and COVID
had an impact on people's death literacy, particularly for the
younger people. Anyone who's experienced to death, anyone who's been
through loss has higher deth literacy than people who haven't.
(05:07):
And so there's lots of things that contribute to that.
But COVID, I think we're still kind of looking at
the data, but certainly voluntary assisted dying because of the
way that you need to kind of have conversations, You
need to actually reach out to your networks, you need
to talk to doctors. You know, there are actually lots
of interactions in that that really stretch your skills and
(05:30):
your understanding.
Speaker 1 (05:32):
Previous generation. It's only a few generations back when death
was very present in our life. The conversation about voluntary
sister dying has perhaps allowed us to have that conversation again.
Have you seen that?
Speaker 2 (05:42):
Yeah, I think that's right.
Speaker 3 (05:43):
I mean, there's a lovely wishy observation that in Victorian
times they talked about death all the time and never
about sex, and today the other way around, you know,
and it's not that many generations ago where the body
would lie in the house and they'd be a viewing
in the house, and so it was. It was a
more human thing in the way Carr is describing her
(06:03):
friends helping her mother come home.
Speaker 2 (06:05):
That's a communal and human thing.
Speaker 3 (06:08):
And when I talk about voluntarists dying, I must and
I want to bracket it with palliative care because really,
despite the fact politically they were oppositional during the legislative debate,
they're very much on the same end of the spectrum,
which is we're all going to die. And the concept
of palliative care, which is also the same idea of
voluntary sist to dying, is not let's get you to
(06:30):
the dying bit, but how do you live as well
as you can while you were dying?
Speaker 2 (06:34):
And that dying.
Speaker 3 (06:35):
Process could be very short, or it could be very long.
It could be several years. Usually you can't be really clear.
So the whole point, as Kerry said, about voluntarists dying
and palliative care, is you talk about these things and interestingly,
I think there's a paralysis around death. And you know,
(06:55):
you said, well, my friends wouldn't know what to do.
They'd bring wine. As Kerry said, that's no bad thing.
But if you put out a call to your friends,
say I need to move my fridge. Somebody's going to say,
I've got a ute, your need perhaps to leave hospital
and go home. That's the same question. It's just a
human question, which is I need help. And not only
(07:17):
do we get paralyzed in the face of death and
assume that the experts have the answers, but the experts
often get paralyzed in the face of death. They don't
know how to have those conversations either. So one of
the things that voluntarists are dying absolutely has done. And
there was a geriatrician in Victoria who said to me
(07:37):
he was ashamed to admit that voluntarists are dying and
made him understand how limited his practice had been, and
that he had subconsciously only be asking questions of patients
that he had an answer to, how is your pain?
I can treat your pain? What are your symptoms? I
might be able to treat your symptoms. Whereas what he
asks now is how do you feel? What is life
(07:58):
like for you? That's a much more sick question. What
is it that you need that if we can't help
you with, maybe someone else can help you with. So
I think it's about transcending that paralysis in the face
of death, which is natural. But the greater group that
you can talk with it.
Speaker 2 (08:15):
About the better.
Speaker 3 (08:16):
I still remember a woman I met several years ago
and she said to me, from the moment her husband
was diagnosed with cancer to the moment he died, he
refused to talk about it, and it was like a
sliver of ice stuck in her heart because she was frozen.
Speaker 2 (08:34):
And that too, and.
Speaker 4 (08:36):
I think what we found in a lot of our
research too, Andrew, was that cares were often had massive
networks that the person who was dying didn't know about
as well. So I think that's that's the other thing
about some of these conversations is that once you know
(08:57):
that you've got community who's up for the conversation or
up for whatever around you, that a lot of carers
are can have that access to other people.
Speaker 1 (09:08):
And you mean the person dying doesn't know because they
don't ask. Unless they're talking about it, then no one
thinks to bring it forward. Does that what you mean?
Speaker 2 (09:14):
Yeah?
Speaker 4 (09:14):
I mean I think what happens in that situation is
a care can be really become quite isolated. Like the
dying person, they don't want to talk about it. There
actually are still practical things to organize. There are still things,
where are the passwords? How do you get into the
bank account? What bills need pay?
Speaker 3 (09:33):
I'm trying that with my life all the time, and
she's not even dying.
Speaker 4 (09:38):
They continue, but you don't get to have the conversation
with the person.
Speaker 2 (09:41):
Actually.
Speaker 3 (09:42):
Geraldine Brooks a beautiful author. Her husband Tony, who is
a friend. He died very suddenly, drop it dead in
the street, and he was young, in his early sixties,
and she's just written a book about this couple moreial days,
about that whole experience. And that's the strong piece of
practical advising HIMS, which is prepare for your death by
(10:05):
helping others like leave the passwords, explain how these things work.
The best things I've learned about the idea of preparing
for your death and thinking about death, actually I'm pretty
sure came from some of your literature, Kerry, which was
the idea of an emotional will. And an emotional will
is not about to you, James, I leave my ute.
(10:28):
It's actually about to you, James. I going to leave
my favorite city in the world, Limerick in Ireland, and
here's the money for you to go there, or to you, James,
I'm going to leave these five songs which mean something
to me. It's actually about, well, this poem, it's about
gifting something of spiritual life value as opposed to an object.
Speaker 1 (10:49):
Yeah, following the legislation in the South Wales, now pretty
much in every state Andrew where what do you see now?
What do you see in our society?
Speaker 5 (11:00):
Now?
Speaker 1 (11:00):
What do you see happening.
Speaker 3 (11:03):
To me? The big question is not so much how
individual families or individuals respond, even though it's very important
to me. The big conversation is within the medical professions.
And I don't actually say that critically because we're all
equally struggling with the concept of the ABYSS. And I
think it is an acknowledged problem in health care, of
(11:27):
futile care at the end of life. It's giving a
ninety year older hip replacement, for example, just overtreating because
of the I've heard it described as doctor as hero.
You know, we give doctors quite reasonably a special place
in our society because we are special things of them.
But part of that training is we must win, we
(11:50):
must treat. When I was first told this by a
doctor in Oregon when I went there, when they said, oh,
we see death as a defeat. I actually laughed. I
thought they were Joe, it's you.
Speaker 1 (12:03):
Know, you can't win. He turns up with that side.
Speaker 3 (12:05):
But at that so, I think there's a much broader
conversation about what is dying and how do we have
that conversation with people who are dying?
Speaker 2 (12:13):
And I think.
Speaker 1 (12:15):
I suppose I just thought I asked that because I
have had a couple of conversations recently with people who
have who were a relative or parent has gone through
voltory assisted dying, yes, And what I noticed was the
way they talked about it in a sense wasn't much
different too. Oh we went to Europe, you know, we
had a nice trip, like it was very normal the
way they said it. They went, I was at my
uncle's death yesterday.
Speaker 3 (12:36):
It can be, you know, dying effects different people differently.
There are people that have gone through the voluntarists dying
process who totally support it and are very glad it's there,
but still found the experience traumatic. It's not a silver bullet.
Speaker 2 (12:48):
It doesn't.
Speaker 3 (12:49):
It's merciful and it's peaceful, but it doesn't It certainly
doesn't remove grief, and it doesn't remove for many people
our reality of dying. We hear many, many testimonies of
families deeply grateful for the way in which they are
able to save fair Well. And I think that's a
very important part of voluntary sist dying, a genuine ability
(13:11):
to save farewell. But people are different. There's one man
that insisted who used voluntarists as dying, and insisted that
he be only with his doctor. And the reason he gave,
which I find both beautiful and heartbreaking, he said, I
don't want the love of my family holding me back.
So you know, I always maintain when I talk about this, that's.
Speaker 1 (13:34):
Not the same thing I did, the same thing.
Speaker 3 (13:35):
It's like, I know, you know, huge Whenever I've talked
about this, I've always maintained, none of us know how
are dying will be.
Speaker 2 (13:43):
All we know is that it will be hours and
hours alone.
Speaker 3 (13:46):
And I think that's why I struggle with that philosophy
that somehow or other that are dying is about society
at large, or about some universal rule that we might
be breaking if we don't do it the right way.
Speaker 1 (14:04):
Kerrie, you know, I sort of want to acknowledge that
you've been through a death quite recently that you or
your mother died only a few weeks ago. As we're
having this conversation as someone who's then spent their life
studying this area and thinking about this area, what have
you learned from the death of your mother?
Speaker 4 (14:21):
It looks similar to what Andrew said before about his
colleague the doctor, like, well, I went straight to the
practical things, didn't. I like, it's a griefs a kick
in the guts, let's face it, and knocks you on you.
Speaker 1 (14:35):
But we are very practical in those first weeks the
moment of death.
Speaker 4 (14:39):
So afterwards, just the other day, when we dropped my
daughter off to UNI, I went to text my mum
as I would usually do, and text her the photo
of her in her dawn, and I think this is
you know. I was really glad of my experience because
(15:01):
I just sat there and cried for about five minutes. Actually,
I just needed to blubberh and cry. I could have
sucked it up, we could have just you know, driven on,
but actually it was really helpful just to really deeply
acknowledge that moment. That was the first time that I'd
experienced that real sense of wanting to communicate with her,
(15:24):
So I.
Speaker 2 (15:24):
Hope it won't be the last time. You know, I
don't cry.
Speaker 4 (15:28):
No, it won't fag you. It won't be But when
she died, because of the work that we had done,
I didn't cry initially, And this is this individual kind
of experience of going through this. I didn't immediately cry.
I felt intensely for my mum, and so I was
just reflecting on that. I was like, wow, I'm not crying,
(15:49):
and I was like and so there was that. The
other thing that is on my mind is that it
took and I see you doctor on the day that mum.
So Mum had three met calls. And if you don't
know what a met call is and you're listening to this,
this is where every registrar, every emergency person on call
(16:15):
runs to the bed of the person who is who's
been called you know, who's crushing. And she had three
of those. And by the end, I'm glad I wasn't
there because I hear that Mum was very distressed and
I took an ICU doctor to sit down with her
(16:35):
and go, what do you want, Maureen, and Mum said
I'm done. And so it didn't matter that I had
done that with the doctors multiple times, or that she
had an advanced care directive clearly stating do not give
me treatment that will prolong my life. It didn't matter
(17:02):
that all of those things were in place. What mattered
was that I see you doctor who absolutely compassionately just
stopped everything and talked to my mum. And it's a
pretty brave thing when your heart is failing and other
things are happening in your body to say no more,
(17:22):
I'm done, because that does that's a decision about you
only have a certain amount of time left in your life. Then,
so that doctor changed the course of my mum's dying.
And yeah, I'll never forget that. And then the compassion
(17:43):
at which she called me to talk with me about
what mum had decided, and the checking difference. The other
thing that I found, the difference between a doctor with
really like person centered communication skills and someone who's focused
on getting the job done. They ring and say, hey,
(18:06):
I'm caring for your mum, I'm caring for a person.
What do you understand about what's happening? And every time
they every time they did that, it just gave me
an opportunity. Even though I know this gig and I've
had calls like that with goo call. I've talked a
(18:27):
hundred times on the other side of that conversation with people,
but it just made me realize that just incredible, that empathy.
You feel it in your bones on a whole other
level when someone is truly going tell me, tell me
your story, tell me your bit. The other part was
(18:49):
no one asked me or my brother about about our experience,
our previous experiences, and who we were and what we
did and who were these children taking their mum home.
My brother's a nurse, you know, I voke did palliative
(19:11):
care for a million years, and it was a really
interesting thing having to like, I just wanted someone to go, hey,
have you done this before? And maybe I'm being a
bit biased there, because that's something that because I've got
a death literacy lens over things, and I'm always interested in, Hey,
(19:32):
what have you done before?
Speaker 2 (19:33):
Hey?
Speaker 4 (19:34):
What experiences do you want to bring to this one?
What do you know about what you're facing? What do
you want to know about next? They were all the
questions that I would be asking if I was working
with someone. I really wanted someone to ask me.
Speaker 3 (19:47):
In a palliative care setting, you've probably been asked those
questions you would hope, but I hope some general hospital
maybe not. I think that speaks to two things what
we're talking about, which is a paralysis in the face
of death and a sense of we just treat, we treat,
we treat, this is what we do. Everybody's terrified of
being accused somehow of not having done enough. So I
(20:08):
think there's that and the doctor, the ICU doctor you
described that strikes me as a perfect piece of medicine.
And it absolutely accords with what a beautiful nurse said
to me in South Australia some years ago. She was
very emotional, she was recording a piece for us about
why they should be voluntari as dying. It was always
(20:30):
instructive to me that the ones that really advocated for
it with the nurses, because they're the ones that see
the suffering. And she just said, why can't we do
the right thing human to human? And that's why I
see this as a multi generational discussion within the health profession.
It's not the people in the health profession. Humans don't
(20:50):
get that, but that's not how they're trained. But I
also think it speaks to depressions on the health system too.
In the same way as we're talking about age care.
Even though we have a much healthier health system than
say America, it's still pressured. And we know we hear
stories from hospitals all the time of resources that have
built but not used, or resources that are used but
(21:11):
are stretched beyond reason. And so I think it's reflecting
all those things.
Speaker 4 (21:16):
Yeah, there was at times, and I think sometimes we
don't talk about this enough. Is paternalism in healthcare?
Speaker 3 (21:22):
Can I explain that?
Speaker 2 (21:28):
Oh, you we covered that career, please do go on?
Speaker 5 (21:31):
Sorry, Oh there's a lived experience, Okay that Yeah, like paternalism,
we just don't have a critical kind of conversation about
paternalism in healthcare.
Speaker 4 (21:47):
And you know, there's that difference between really great care
and then but if you just kind of tip it
a little further into do you really want to do that?
Don't you want to be the daughter not the care?
You know, like there are there were kind of particular
things that happen in healthcare that that we don't We
(22:12):
aren't critical enough, is what I'm saying. I don't know
what the answer is, but I would like the system
to be more critical about about some of those things
that perhaps they take for granted a little and look,
sometimes it would be maybe permission for a family to
kind of be the daughter.
Speaker 1 (22:30):
Well, even in my experience and my cancer experience of
the last year or so, I've now done several talks
at doctors conferences and things like that, and what sort
of strikes me as funny about it as I go,
we're thinking of taking interest in the patients perspective. Perhaps
you'd like to come and talk about them patients perspective?
Speaker 2 (22:48):
Is this new?
Speaker 4 (22:48):
You know?
Speaker 3 (22:50):
I went on you a about the I D quite
early in my advocacy, which was a terrifying experience, by
the way, and there was another fairly prominent doctor who
was strongly in opposition, and I completed what I had
to say by basically saying, you know, doctors, it's time
to listen to your patients. And this doctor was a
very good writer, wrote this exclorating piece in a magazine afterwards,
(23:14):
just accusing me of being patronizing towards doctors. I'm thinking
that's patronizing. Yeah, I mean, the worst example I know
of this there was a former AMA official and they
held a debate on this internally in twenty sixteen that
I had a link to, and so I watched it,
and he was a geriatrician and a senior doctor, and
(23:39):
somebody on the other side of the debate because he
was opposed, had put to him that there's a great
public support for this, and he said, and I'm quoting
pretty close to obating, he said, that's why we're paid
two hundred thousand dollars a year. There cannot be a
more you focus experience than you're dying. I don't care
what your religion tells you in the end, only you
(24:01):
were going there when it happens.
Speaker 1 (24:03):
You've given Is it a decade now to this have
you been?
Speaker 3 (24:08):
I think you know there are times that I'm sure
Kerry would agree with this. There are times I think,
you know, I've had enough to thank you very much,
But I would have to say it's been the most
brilliant second act for me after show business. Far more
meaningful to me. The correspondence I've had in the conversations
(24:31):
I've had have been so privileged, and the gratitude that
we as an organization go Gentle receive from people whose
families had the optimum voluntarist dying is immense. And so yes,
I am glad and certainly, I view this as the
(24:52):
real work that I've done, not whatever I may have
done in television. Perhaps if I want a logo, i'd
feel differently about that.
Speaker 2 (24:58):
I think you've peaked a blaw uph k, yeah, I
think so. It was all downhill after that first year. Exactly.
Speaker 1 (25:04):
Yeah, Well, I almost feel like I need to go
and have a good cry. It's been a beautiful discussion.
Thank you so much for sharing it with us here
on life.
Speaker 2 (25:13):
Can I ask you a question?
Speaker 3 (25:14):
Yeah, you just wound out you're getting tierty.
Speaker 1 (25:17):
Yeah, what are you? I'm not entirely clear. I think
I'm moved by Kerry and sort of wanting to experience
your grief in some ways deal with that. Or I
feel like I think I'm feeling that you holding you
in sort of that you know, we need to sort
of let that, let that go a bit. So, Yeah,
(25:38):
it's interesting. I think I'm moved by your work as well. Look,
we have a funny connection over many decades, and to
observe you go through do you know, to see you
transformed doing that work's been quite extraordinary. And I'll probably
just contemplating my own.
Speaker 3 (25:56):
And exactly, James, during the height of COVID. Quite unexpectedly,
a very good friend of mine ran me for Victoria,
and we knew his wife had pancreatic cancer, which is
obviously a very tough diagnosis, and then he said, she's
(26:20):
chosen VAD and she's going to die on this day.
And despite all the thousands of hours spent in that
debate to get that law passed, the Victoria which was
the first one in Australia, and it was an absolute
brutal knife fighter her battle to get that law passed.
For some reason, it had never occurred to me that
somebody who I knew and loved was going to use
(26:41):
this law. And I remember, despite everything I knew about it,
on the day, Jennifer and I we got out whiskey glasses,
we poured a whiskey, we lit a candle. But I
remember thinking as the clock ticked down to the moment
felt very unreal to me. But the strong emotion that
(27:03):
I felt at the knowledge in the moment of her
dying was not that she had died. It was actually
about just the richness of life. Oh my god, life
is so rich, and that's what I felt. I just felt, Wow, life.
Speaker 4 (27:20):
I think that is what you say there is so
deeply important because one of the reluctances around talking about
death and dying is not being able to maybe lean
into some of that feeling around that richness of life.
When we were going through photo albums, there were photos
(27:43):
there that, you know, that we'd never really taken notice
of before. How we wanted to know about them? Now
are these people? Where are they now? And it does
connect you to life very profound way and all of
(28:03):
the messiness of that. So and that's I think only
a great thing. Watching my children twenty two and seventeen
be with their grandma. We did a very a simple thing,
put a comb a brush on the end of her bed.
And Mum used to love having a hair brushed, and
(28:27):
we just said to the kids, just brush her hair,
maybe you won't gorgeous. And so that just very simple
action just then gave them something to be with her
while she was dying. And yeah, and my children did
that many times while she was dying. And and that's
(28:49):
when we would sit and talk about what we did
with nanny and things, and we you know, so it's
worth leaning into. I guess I see, it's worth getting
the whiskey out. Having a think about about about these
things and reflecting in on it and how and what
(29:15):
it means to you and what you want to do.
Speaker 3 (29:19):
Thank you, Thanks, Thanks James, come on, let's haid that
out coming here exactly very good.
Speaker 1 (29:29):
That was a beautiful moment. Thank you, Thank you. Quoting
thanks to our guests Andrew Denton and doctor Kerry Noonan.
You've been listening to Season six of Life's Booming Dying
to Know, brought to you by Australian Seniors. Please leave
a review or tell someone about it. Head to seniors
dot com dot au Slash podcast for more episodes. W
(29:50):
Your Life Be Booming. I'm James Valentine.
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