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We are often desensitized to death instead
of being sensitized to the whole process.

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We don't see that leader where advanced
care planning could be extraordinarily

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helpful, particularly if people are
unable to articulate what they would like.

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I mean, my husband and I have
got very different ideas about

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00:00:23,609 --> 00:00:25 ... Read More

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We are often desensitized to death instead
of being sensitized to the whole process.

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00:00:08,410 --> 00:00:13,790
We don't see that leader where advanced
care planning could be extraordinarily

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helpful, particularly if people are
unable to articulate what they would like.

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I mean, my husband and I have
got very different ideas about

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how we want our funerals to be.

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He doesn't want one.

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And I want to party.

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Welcome to Don't Be Caught Dead, a
podcast encouraging open conversations

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about dying and the death of a loved one.

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I'm your host, Catherine Ashton, founder
of Critical Info, and I'm helping to

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bring your stories of death back to life
because while you may not be ready to die.

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At least you can be prepared.

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Don't Be Caught Dead acknowledges
the lands of the Kulin Nations

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and recognises their connection
to land, sea and community.

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We pay our respects to their Elders,
past, present and emerging and extend

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that respect to all Aboriginal and
Torres Strait Islander and First

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Nation peoples around the globe.

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Today I have with me Judith Leeson.

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Judith has been a passionate advocate
for people living with disadvantage

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throughout her career and has enjoyed
leadership roles in early childhood,

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disability and career development for
nearly seven decades, delivering services

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in the not for profit sector and through
her family business Vector Consult.

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Building individual and community
independence and capacity through

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innovative evidence-based programs
Appointed as a member of the Order of

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Australia in 2005 for significant services
to the community, particularly through

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support for people seeking opportunity for
lifelong learning and career development.

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She has been given the unique.

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of a lifetime achievement
award by the Career Development

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Association of Australia, and
is a fellow and life member.

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Thank you so much for
joining us today, Judith.

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Thank you for

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having

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me, Catherine.

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Now, Judith, I had the pleasure of
sitting next to you on a table at a recent

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symposium that Advanced Care Planning put
on in Adelaide in November of last year.

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And I was really blown away.

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I think it was quite a challenging
or brave decision that Advanced Care

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Planning did in planning that symposium.

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Because the lineup and the way
in which they started was having

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yourself on a panel with a series
of older Australians talking about

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your own personal experiences in
relation to advanced care planning

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and it wasn't all positive, was it?

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Awesome.

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And I have to say that there was
a few things that I noted that

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really struck me about you, Judith.

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And my first, you know, notes
that I wrote in my book here

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was, worked until the age of 83.

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And you're now 90, you're still living
in your home, but the thing that I

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just thought was the most beautiful
thing and one of my takeaways that I

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just thought was gorgeous was when you
talked about your husband, Brian, and

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you referred to him and I've noted this
quote down, we are one, my husband.

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And I thought that was just such a
beautiful way to actually, you know, refer

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to your husband and your relationship.

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Now you have had quite an amazing
career and not only with your working

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life but then also your volunteering
roles since you retired at the,

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I think you worked part time up
until the age of 85, is that right?

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That's right.

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Yes,

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I've just seen my last client.

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Oh really?

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Yes, they linger on sometimes.

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I think it's affection
rather than dependency.

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Oh,

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that's so lovely and I'm not
surprised whatsoever Judith.

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So Tell me Judith, I'm sure we can
learn more about your career as we go

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through the conversation, but going back
to that time where we first met at the

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Advanced Care Planning Symposium, you
know, what inspired you to actually have

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your passion for advocacy in relation to
end of life planning and helping people

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really can take control of their futures?

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Where'd that start?

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Well, I was born during the
Depression and my earliest memory

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was when I was about three.

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A man came to our back door
with three boxes of matches

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to sell for one penny each.

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This has been emblazoned in my memory.

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My family had a very large
business of general stores

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in outer metropolitan areas.

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In those days you also had wheat for the
chickens, you know, it was everything.

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So we had boxes of matches in our house.

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But my mother bought two
boxes, and I can remember it.

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She was standing there, and she said, I
would love to buy some mattress from you.

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Gave him three pennies, but
let him keep the other box.

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And he cried.

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I don't remember any more than that,
but I think at that stage, there

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was a spark and in our family, which
was, my parents were dedicated to

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community service through their church.

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but also outside of the church.

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And I just developed a very strong sense
from then on that was encouraged by my

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parents to look at how we could make the
world a better place for other people

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who weren't as fortunate as we were.

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And then I was five when the
war started, World War II.

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We've had several wars,
many wars since then.

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But.

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My family were very
active in the community.

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We supported my mum's sisters, whose
husbands were serving overseas.

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They had their babies at our place.

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We looked after them.

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I collected newspapers and
knitted socks for sailors.

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I hope they never put them on.

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They would have been so uncomfortable.

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And collected bottles.

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anything to raise money and
also through the Red Cross.

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So, from a very early age, I not only had
that strong sense of social justice, but

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I had a really strong sense of agency.

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I could do things that made a difference.

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I didn't have things done to me
and I didn't do things to people.

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It was really for people.

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And during the war, I mean, we didn't
endure much hardship in Australia,

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but there was certainly a whole
lot of problems with families when.

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They had serving members overseas and
my family supported at least a dozen

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families through their business so
that they could manage and there was

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just so much that you could do and you
knew that it was a good thing to do.

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So, yes, I guess I started off like that.

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I could see that we were very privileged.

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We weren't a wealthy family.

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But we were a comfortable family.

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And so, you know, I was always probably
chastised for being talkative at school.

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But I was always given extra little things
to do, like writing the news in grade

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six for the local school netball team.

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So, and in the church, I was given
opportunities to lead, to speak publicly.

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I've put those days behind me, actually.

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Now I am not a religious person, so I
don't have that faith that's sustained

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by parents, but I have those values.

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that I hold really dear to, and
they are just so embedded in

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my life that sometimes, well, I
don't have to think about them.

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They're just there in what I try to do.

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Obviously I fail sometimes, as
everybody does, to live a life of total

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integrity, but I do try very hard.

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To have a life of integrity and purpose.

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And Judith, I'll come back to those values
in a moment because I know that you're a

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parent and that I think that when we're
raising children, that's when we really.

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Have to really clearly define what
our values are when we bring up

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another generation But the thing
that strikes me about you is that

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you ran your own business for many
years And where did that start?

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Like what year did you actually start
running your own business as a woman when

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You know, you think that a majority of
women, my mother is 85 and I know when

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she talks about opportunities, I know
that when she was working at her age, her

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first job that she had, most women of her
era had to give up their job when they

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got married or when they got pregnant.

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And so that was very much the
feeling that I have about that

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culture at that era at that time.

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So

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when did you start your business?

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Well, I came from a business family.

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And my father was an innovator and
started up a number of organizations

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for young people, particularly young
men who didn't seem to have much

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opportunity through men's basketball.

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So he was the national president of
the Men's Basketball Association.

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For about 40 years, I think, and
started up a men's basketball

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association in South Australia.

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So he was a director and founder
of something which is used

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to be called United Grocers.

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And he was the chair.

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So I had that model of taking
advantage of opportunities without.

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Being eager for promotion, you know, in
my teaching, after eight years of teaching

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junior primary kids, which I absolutely
love, I became a school principal.

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Now, I was only 26, and I was given my own
school with 15 teachers, all of whom were

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20 years or 30 or 40 years older than me.

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And I loved it.

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So I actually had a career when
most of my contemporaries were

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getting married and having children.

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By the time I was married, their
children were in primary school.

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So I married Brian at 31 and
I had to resign, of course,

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for the compulsory three days.

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So my super wasn't ever paid,
it didn't have to be, because

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I had a break in service.

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When I first started teaching, I
earned two thirds of the male wage.

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That was injustice.

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So injustice always sparks me.

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Through activity, well, to thinking about
it, and then say, How can I change this?

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So as a young school principal
I was very innovative.

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Brian and I then lived in London
and I was taught in the East End at

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Bethnal Green, a school noted for the
difficult background of their children.

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So when we came back, I unexpectedly
had two children, both girls.

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But within about three years of being an
at home mum, I had that feeling that there

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was more to my life than rearing children,
which I regarded as incredibly important.

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And I went to work with the Autistic
Children's Association part time.

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And within a couple of years I was working
with the director in diagnosing autism

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and in providing the first programs.

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And what period was this?

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Well this was when I was in, I went
from early childhood disability and

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then I was recruited, well poached I
think, to run an early intervention

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program at Flinders University
for children with Down syndrome.

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And that was where I was.

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I discovered that teaching is
often telling people what to do.

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Disability is finding out what
people can do and encouraging

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00:13:28,265 --> 00:13:30,545
them to take the next step.

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So, I was kind of transitioning
into a different mode.

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Well, I happily was retrenched
from that job on a funding issue.

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I like to think it wasn't
a performance issue.

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And I spent two really dark years
feeling so strongly about the injustice.

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But I instigated a court case,
and I felt that I was vindicated.

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So, I'm not afraid to take action.

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And what year was this in?

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00:14:07,130 --> 00:14:07,270
Was

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this in

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the early 70s at this stage?

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00:14:09,900 --> 00:14:10,529
Yeah, yeah.

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00:14:10,550 --> 00:14:13,290
Well, it moved up to the 80s actually.

200
00:14:13,349 --> 00:14:14,139
Yeah, right.

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So I, well, once the children went to
school and I got the job with autism,

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and then I was retrenched, I had two
years where I was clinically depressed.

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I could not.

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believe that people would
be so cruel and dishonest.

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00:14:33,245 --> 00:14:36,594
And you said that during that
time, even though that you were in

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your darkest depths, you still had
the ability to fight for what was

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right and take people's support.

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Yeah.

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I had some counselling.

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You know, my husband was
retrenched from a mining company.

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00:14:51,755 --> 00:14:55,535
He was a geologist and
had moved into research.

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00:14:56,915 --> 00:15:02,625
And his company just deprogrammed his
key one day, so that when he got to

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00:15:02,955 --> 00:15:05,145
work, he couldn't get in the door.

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00:15:05,605 --> 00:15:08,954
And that was because that
company had lost millions of

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dollars in an overseas venture.

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So they decided that they would cut
off their research as a savings.

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00:15:17,664 --> 00:15:19,624
It's always the first to
go, isn't it, research?

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00:15:20,760 --> 00:15:22,410
It's research always
seems to be one of the

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00:15:22,410 --> 00:15:22,950
first things to go.

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00:15:23,870 --> 00:15:29,190
Yeah, because they haven't discovered
a major mining site for five years.

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00:15:29,240 --> 00:15:35,680
I mean, you only do that
every 30 years or 40 years.

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00:15:35,950 --> 00:15:38,530
Such unrealistic expectations
really, wasn't it?

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00:15:39,130 --> 00:15:44,930
But what I saw, because of my counselling
during that time when I was not working,

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I kind of thought I might have retired.

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00:15:47,880 --> 00:15:54,770
But as I got my energy back, and I
looked at the materials that My husband

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00:15:54,770 --> 00:15:57,750
received from his outplacement counsellor.

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00:15:59,600 --> 00:16:06,050
I realised there was not a single
word in there about loss or grief.

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00:16:06,560 --> 00:16:12,069
And, you know, it was, we'll set you up
in an office in a high rise building.

229
00:16:12,070 --> 00:16:14,660
You know, you'll have your own secretary.

230
00:16:14,910 --> 00:16:16,159
We will help you, right?

231
00:16:16,570 --> 00:16:22,150
Your resumes, you know, it was never
going to happen because the most

232
00:16:22,150 --> 00:16:29,819
important thing to deal with when people
are in a crisis is to help them find

233
00:16:29,819 --> 00:16:33,250
their own way out of that process.

234
00:16:34,250 --> 00:16:38,140
And that's interesting because that
comes back to that experience that you

235
00:16:38,140 --> 00:16:43,129
had from also what you were mentioning
earlier about transitioning from being

236
00:16:43,130 --> 00:16:47,610
a teacher where you're telling people
to actually seeing what people need

237
00:16:47,750 --> 00:16:51,830
and then providing what they need to
help themselves out of a position.

238
00:16:51,910 --> 00:16:52,050
Yeah,

239
00:16:52,320 --> 00:16:52,740
yeah.

240
00:16:52,830 --> 00:16:58,439
So I looked at the material that
Brian had and I thought, um, There's

241
00:16:58,439 --> 00:17:03,699
an element missing in our placement
work and it's called counselling.

242
00:17:04,030 --> 00:17:11,230
So I decided I'd learn to type because I
thought I could be a good PA for somebody.

243
00:17:11,339 --> 00:17:18,104
So I went to the Commonwealth Employment
Services and they gave me a provider and

244
00:17:18,104 --> 00:17:23,849
I went for an interview which seemed to go
on much longer than I would have expected.

245
00:17:24,079 --> 00:17:28,250
And at the end of the, I always kept
thinking, heavens, if you have to go

246
00:17:28,300 --> 00:17:33,140
through this process to learn to type,
what if you wanted to do something

247
00:17:33,200 --> 00:17:37,670
like, you know, be a hospitality
worker, what would you have to do?

248
00:17:38,080 --> 00:17:41,789
But at the end of the interview,
they offered me a job, but the job

249
00:17:41,799 --> 00:17:46,289
was working with single parents
returning to the workforce.

250
00:17:46,290 --> 00:17:52,030
So I had a brief induction, sitting
in on a service which I could only

251
00:17:52,070 --> 00:17:56,515
describe as damaging to the participants.

252
00:17:56,875 --> 00:17:59,685
And the next week I had
my own course to run.

253
00:17:59,835 --> 00:18:02,205
So I stayed there for a year.

254
00:18:02,235 --> 00:18:08,955
I became the manager after six months
of a larger area, regional area,

255
00:18:09,095 --> 00:18:15,755
and I was retrenched again because
it turned out that my employer

256
00:18:15,965 --> 00:18:22,115
had not been entirely honest and I
looked a bit threatening, I think.

257
00:18:22,845 --> 00:18:29,055
Because I was asking difficult
questions and getting non answers.

258
00:18:29,865 --> 00:18:32,395
So anyway, I was retrenched once again.

259
00:18:32,895 --> 00:18:35,985
I took an unfair dismissal
court case on board.

260
00:18:36,725 --> 00:18:40,044
Resented myself and was
once again vindicated.

261
00:18:40,315 --> 00:18:42,365
I don't want to sound
smug about this though.

262
00:18:42,955 --> 00:18:45,245
Because I prepared so well.

263
00:18:46,260 --> 00:18:47,180
you know, for that.

264
00:18:47,710 --> 00:18:53,850
So, I thought, well, I think I set up
my own business in competition to the

265
00:18:53,960 --> 00:18:56,810
man who'd retrenched me, and I did.

266
00:18:57,139 --> 00:19:00,870
And that took a while because I
read everything I could about career

267
00:19:01,070 --> 00:19:05,260
development from 1907 onwards.

268
00:19:05,440 --> 00:19:07,579
So I'm a voracious reader.

269
00:19:07,860 --> 00:19:10,280
I love reading and I love learning.

270
00:19:11,020 --> 00:19:18,139
So I put in a proposal to the
Commonwealth and was accepted and ran

271
00:19:19,030 --> 00:19:22,100
a three week career guidance course.

272
00:19:22,445 --> 00:19:25,585
And how old were you when you
started your own business, Judith?

273
00:19:25,735 --> 00:19:26,935
Yeah, 57.

274
00:19:27,425 --> 00:19:29,975
And this would have been
late 80s, early 90s?

275
00:19:30,045 --> 00:19:35,565
Yes, we started our business
in 1991 and we got contracts.

276
00:19:35,875 --> 00:19:41,074
I hired premises in Adelaide
in the CBD, hired a secretary

277
00:19:41,914 --> 00:19:44,570
and there you go, off we go.

278
00:19:44,570 --> 00:19:53,444
So, because I think we use the evidence,
Rather than a tick box approach to career

279
00:19:53,715 --> 00:19:57,774
development, we were always in work.

280
00:19:57,925 --> 00:20:03,705
And then we started to employ people,
large contracts to do our placement

281
00:20:03,705 --> 00:20:10,364
work with the Department of Defence,
DVA, tax, even education and employment.

282
00:20:11,685 --> 00:20:17,580
And Our business really prospered
for a long time, but unfortunately

283
00:20:17,630 --> 00:20:22,880
during that period of prosperity when
I was taking on so much additional

284
00:20:22,890 --> 00:20:29,260
voluntary work as National President
of the Korea, Development Association

285
00:20:29,260 --> 00:20:32,020
and I helped set up the industry body.

286
00:20:32,180 --> 00:20:37,610
One permanent employee was
meticulously defrauding us because

287
00:20:37,610 --> 00:20:40,309
she had control of our accounts.

288
00:20:40,530 --> 00:20:47,029
So we lost all our money and
apparently we also owed money to tax.

289
00:20:47,550 --> 00:20:48,880
All sorts of places.

290
00:20:49,420 --> 00:20:56,160
And when, later on, we used my husband's
superannuation to pay everybody.

291
00:20:56,579 --> 00:21:01,890
So, with our values, we couldn't go
bankrupt because they were our debts.

292
00:21:02,110 --> 00:21:05,259
So, we just rebuilt the business.

293
00:21:05,529 --> 00:21:06,149
So, how long

294
00:21:06,169 --> 00:21:06,729
did it take

295
00:21:06,729 --> 00:21:06,859
you

296
00:21:07,220 --> 00:21:08,680
to rebuild that business?

297
00:21:09,230 --> 00:21:14,590
Well, we decided that we would
just be a mum and dad business.

298
00:21:14,895 --> 00:21:20,545
As we were rebuilding, I don't
think my husband would ever let

299
00:21:20,615 --> 00:21:23,844
anyone go near our finances again.

300
00:21:24,415 --> 00:21:29,544
And he didn't trust me not to employ
people with a bad record because I always

301
00:21:29,564 --> 00:21:34,585
could see the good in them and thought
the bad record could be left behind, but

302
00:21:34,595 --> 00:21:37,545
sometimes it can't be, just occasionally.

303
00:21:38,215 --> 00:21:43,435
So, we We gradually recovered and
instead of doing big Commonwealth

304
00:21:43,435 --> 00:21:47,854
contracts, we did state government
ones and we worked from home.

305
00:21:48,695 --> 00:21:53,624
So, after we'd recovered a bit from
the fraud, we decided that we'd have

306
00:21:53,624 --> 00:22:00,304
a new start and we would move to
the country and buy a little farm.

307
00:22:00,305 --> 00:22:00,975
That's where we live now.

308
00:22:01,835 --> 00:22:02,565
Oh, that's

309
00:22:02,825 --> 00:22:03,395
beautiful.

310
00:22:03,465 --> 00:22:04,185
Really beautiful.

311
00:22:04,735 --> 00:22:06,285
We made it beautiful.

312
00:22:06,285 --> 00:22:08,215
It was just a cottage in a paddock.

313
00:22:08,945 --> 00:22:11,395
with a big shed away from the house.

314
00:22:11,545 --> 00:22:16,525
It sounds like that your time and the
cottage has, you know, I think you've

315
00:22:16,545 --> 00:22:20,965
mentioned that it's over 20 years now
that you've been there with your husband.

316
00:22:21,364 --> 00:22:26,305
And from my understandings in our earlier
conversations, you've mentioned that you'd

317
00:22:26,305 --> 00:22:28,495
like to stay there as long as possible.

318
00:22:28,685 --> 00:22:34,739
So Judith, when you were in the symposium
last year, you did touch on the challenges

319
00:22:34,739 --> 00:22:39,030
that you have with just exactly what
you're referring to then is the fact

320
00:22:39,030 --> 00:22:44,340
that you've got the neurologist saying
that Brian can drive his car, yet he

321
00:22:44,359 --> 00:22:49,259
is deemed as far as making decisions
in relation to his advanced care

322
00:22:49,270 --> 00:22:54,199
planning, that because of his diagnosis,
he's no longer in deemed competent.

323
00:22:54,480 --> 00:22:58,179
I believe that's the term that they
use to make his advanced care plan.

324
00:22:58,760 --> 00:23:03,319
And what other limitations have you found
given your experience with not only Brian,

325
00:23:03,320 --> 00:23:05,560
but yourself personally in recent years?

326
00:23:05,729 --> 00:23:14,700
Well, I might just go back a little in
time when In 2020, I was unexpectedly

327
00:23:14,730 --> 00:23:22,390
admitted to hospital with acute
sepsis and spent four weeks in the

328
00:23:22,390 --> 00:23:28,769
Royal Adelaide Hospital, during which
time I had my hip replacement washed

329
00:23:28,769 --> 00:23:32,180
out, which was a major surgery.

330
00:23:32,310 --> 00:23:38,215
And during that time, when I think
I was probably quite, Delirious.

331
00:23:38,645 --> 00:23:44,955
A lovely young intern came and sat down
by my bed and held my hand and said, Now

332
00:23:45,024 --> 00:23:53,504
Judith, have you done any thinking about
how you would like your end of life to be?

333
00:23:54,450 --> 00:23:58,120
I thought, it started me
back into reality, I think.

334
00:23:58,450 --> 00:24:02,040
I said, well, I don't really
need to plan yet, do I?

335
00:24:02,600 --> 00:24:06,189
And he said, well, you know,
could we talk about this?

336
00:24:06,570 --> 00:24:12,349
Look, he looked about 15, he was probably,
you know, a young, a very young intern,

337
00:24:13,230 --> 00:24:15,619
but qualified as a doctor, of course.

338
00:24:15,640 --> 00:24:21,925
And he gently kind of prompted me
to say, well, you know, I wouldn't

339
00:24:21,925 --> 00:24:27,165
want to be brought back to life by a
defibrillator because I know the shocking

340
00:24:27,245 --> 00:24:30,145
damage that can cause to older peoples.

341
00:24:30,254 --> 00:24:34,395
It's not a very safe procedure
for someone of my age.

342
00:24:34,494 --> 00:24:39,395
So we had a little chat, but when
I went into rehab for six weeks and

343
00:24:39,665 --> 00:24:44,814
finally came home, I said to Brian,
you know, this doctor felt that we

344
00:24:44,814 --> 00:24:47,465
should have do advanced care planning.

345
00:24:47,495 --> 00:24:48,804
Now I had heard about it.

346
00:24:49,034 --> 00:24:56,694
Because I read very widely, and I had
an interest in aged care at this time.

347
00:24:57,064 --> 00:25:03,004
Because when I went home, I had
to have some support in the house.

348
00:25:03,274 --> 00:25:05,804
And some clinical services.

349
00:25:05,915 --> 00:25:08,784
So, we went to see a lawyer.

350
00:25:09,225 --> 00:25:12,205
I mean, I come from a
family of lawyers as well.

351
00:25:12,274 --> 00:25:16,110
And our family, uh, in
the law, our children.

352
00:25:16,199 --> 00:25:21,639
And so we went to see a lawyer and
made a new will, very simple one, much

353
00:25:21,639 --> 00:25:26,560
simpler than our previous one, which
was probably 30 years old, I think.

354
00:25:27,129 --> 00:25:29,770
And we filled in and filed for clear.

355
00:25:30,035 --> 00:25:36,805
planning document and I think that
I didn't come back to that document

356
00:25:37,014 --> 00:25:43,764
until I started reading when I was
invited to the Advanced Care Symposium

357
00:25:44,365 --> 00:25:50,425
to prepare myself and I looked through
the document which I have beside me

358
00:25:50,905 --> 00:25:56,925
and it was kind of, it's almost as if
we had a tick and flick questionnaire

359
00:25:57,355 --> 00:25:59,585
and we just copied out phrases.

360
00:25:59,665 --> 00:26:01,545
Or sentences.

361
00:26:01,975 --> 00:26:07,235
So, even though we thought, we did
it at home, and we did it together,

362
00:26:07,355 --> 00:26:15,534
but even then, after my, near
escape from death and we still felt

363
00:26:15,675 --> 00:26:23,304
that we hadn't quite captured the
spirit of end of life planning for

364
00:26:23,304 --> 00:26:23,915
us.

365
00:26:24,134 --> 00:26:27,094
What do you think was missing from that,
Judith, because that's something that

366
00:26:27,094 --> 00:26:31,215
I noted here is when you were talking
about the fact that it was a ticker

367
00:26:31,215 --> 00:26:35,175
box experience and it was very sterile.

368
00:26:35,195 --> 00:26:36,794
So in hindsight, what.

369
00:26:36,925 --> 00:26:41,294
Do you feel other things that would
give you more feeling like it was

370
00:26:41,294 --> 00:26:44,445
something planning for yourself
that represented you and Brian?

371
00:26:44,544 --> 00:26:48,144
Well, I think we need deeper literacy.

372
00:26:48,530 --> 00:26:55,600
in death and dying, a deeper
understanding of the processes of dying.

373
00:26:55,810 --> 00:27:02,830
But what we lack is the ability to
forecast the time and the manner

374
00:27:02,969 --> 00:27:05,600
of our dying and our deaths.

375
00:27:05,835 --> 00:27:13,175
And one thing that we really lack is good
medical knowledge about these things.

376
00:27:13,574 --> 00:27:20,884
So, I have been reading much more
deeply in this area, and I am

377
00:27:21,225 --> 00:27:28,334
delighted now that I'm on the board of
Flinders University's Research Centre.

378
00:27:28,335 --> 00:27:31,675
for palliative care, death and dying.

379
00:27:31,764 --> 00:27:38,534
And whenever I'm involved in something,
it's got to be 100 percent involvement.

380
00:27:38,715 --> 00:27:46,164
And so I'm reading a lot more and learning
a lot more about the wonderful resources

381
00:27:46,164 --> 00:27:48,564
that are available to help people.

382
00:27:48,995 --> 00:27:53,274
Understand and navigate end of life.

383
00:27:53,794 --> 00:27:56,565
And what sort of things have you
found that have stood out for you

384
00:27:56,615 --> 00:28:01,955
that have enriched that process or
will perhaps make those conversations

385
00:28:01,955 --> 00:28:04,224
around end of life planning easier?

386
00:28:04,415 --> 00:28:10,014
Well, Brian now has a terminal
disease which has changed.

387
00:28:10,930 --> 00:28:13,220
Everything in our perception.

388
00:28:13,590 --> 00:28:20,600
I have many physical health issues,
some of which are moderately serious.

389
00:28:20,730 --> 00:28:27,329
But in spite of the fact that I have very
impaired mobility, actually I feel fit.

390
00:28:27,550 --> 00:28:28,790
I may not be healthy.

391
00:28:28,820 --> 00:28:30,490
Well, I think I'm even healthy.

392
00:28:31,100 --> 00:28:36,270
I think I acknowledge my
comorbidities, but I don't spend

393
00:28:36,270 --> 00:28:38,200
too much time worrying about them.

394
00:28:38,240 --> 00:28:39,620
I just get on with life.

395
00:28:39,785 --> 00:28:48,635
But for Brian, the diagnosis, of course,
caused him to feel extremely angry

396
00:28:48,804 --> 00:28:58,374
because he prizes, I think, intellectual
excellence and evidence based practice

397
00:28:58,494 --> 00:29:00,865
in everything he is, after all.

398
00:29:01,650 --> 00:29:03,110
a scientist at heart.

399
00:29:03,970 --> 00:29:10,290
I'm a helper, but we've managed to combine
our activities so that we complement

400
00:29:10,290 --> 00:29:16,510
each other, but now I'm moving into
a totally different role, and I'm not

401
00:29:16,900 --> 00:29:25,045
his carer yet, but I propose to be his
carer when he needs to be cared for.

402
00:29:25,604 --> 00:29:32,264
But, I find that word tricky because I
care deeply for him now, and little things

403
00:29:32,264 --> 00:29:36,135
that I do would show him how much I care.

404
00:29:36,335 --> 00:29:42,844
So, the dynamic has changed
between us I think, as his disease

405
00:29:43,344 --> 00:29:49,794
advances very slowly, but because
I'm always been interested in

406
00:29:49,794 --> 00:29:53,395
psychology, there are subtle changes.

407
00:29:53,485 --> 00:29:59,524
That means that I need to be
more thoughtful before I speak.

408
00:30:00,910 --> 00:30:01,790
sometimes.

409
00:30:02,440 --> 00:30:06,080
So that I don't trigger confusion.

410
00:30:06,290 --> 00:30:11,430
I mean, Brian has always laughed and
said, the way I speak is tangential.

411
00:30:12,120 --> 00:30:14,509
You know, I don't go around in circles.

412
00:30:14,869 --> 00:30:19,580
I hop from one thing to another
as a new thought emerges.

413
00:30:19,925 --> 00:30:26,425
I have to be very careful now not to
do this, but keeping our conversation

414
00:30:26,635 --> 00:30:33,704
on an even plane has never required
any effort before, but now I need

415
00:30:33,725 --> 00:30:36,154
to be more thoughtful about it.

416
00:30:36,375 --> 00:30:42,215
What I say and how I say it because
I want him to be happy and I

417
00:30:42,225 --> 00:30:47,175
will be happy too as he is happy
and he's happy working outside.

418
00:30:47,555 --> 00:30:53,955
So our routines have changed a little,
mine have changed a lot more than his.

419
00:30:54,204 --> 00:30:59,625
He's still doing what he's done for
the last few years and that is keeping

420
00:30:59,625 --> 00:31:02,595
our property in pristine condition.

421
00:31:03,485 --> 00:31:08,360
In so far as that's possible in the
back roots of the Adelaide Hills.

422
00:31:09,120 --> 00:31:14,715
I mean, we have PO and branches all over
the place, so we say that's habitat.

423
00:31:14,925 --> 00:31:15,585
That is good.

424
00:31:15,585 --> 00:31:16,035
I like

425
00:31:16,035 --> 00:31:16,185
that.

426
00:31:16,455 --> 00:31:18,075
It is very good habitat.

427
00:31:18,135 --> 00:31:21,375
It can stay there and
produce very good habitats

428
00:31:21,465 --> 00:31:22,215
in the paddock.

429
00:31:22,215 --> 00:31:25,635
It's great and the sheet managed
to navigate it really well.

430
00:31:25,935 --> 00:31:29,385
Big trees cut up by someone
who comes to do that.

431
00:31:29,855 --> 00:31:33,145
And so, we try and live
fairly sustainably.

432
00:31:33,435 --> 00:31:38,245
So, when a big tree goes down,
we have it cut into big pieces,

433
00:31:38,575 --> 00:31:43,125
we season it for two years, and
then we put it in our combustion

434
00:31:43,165 --> 00:31:45,975
heater, which warms the whole house.

435
00:31:45,985 --> 00:31:49,654
So, and these are the
routines that Brian loves.

436
00:31:49,655 --> 00:31:52,475
You know, we manage our own water supply.

437
00:31:52,905 --> 00:31:56,375
We're having to buy in
right now, which is unusual.

438
00:31:57,080 --> 00:32:03,420
We buy a tanker of water every fortnight
now because we haven't had any rain.

439
00:32:03,620 --> 00:32:11,329
All of that gives him purpose, it has
meaning to both of us and it keeps him

440
00:32:11,590 --> 00:32:17,600
active because he has to respond to
the seasons as well as everything else.

441
00:32:17,930 --> 00:32:23,430
How have you been able to document
those things that are valuable to Brian?

442
00:32:23,860 --> 00:32:27,810
Have you been able to formally document
them in the advanced care plan?

443
00:32:28,160 --> 00:32:32,280
Or is it a conversation that you've had
with the family about what you value?

444
00:32:32,790 --> 00:32:39,230
How do you communicate what your needs
are for a time where you may no longer

445
00:32:39,250 --> 00:32:40,960
be able to communicate those Judith?

446
00:32:41,760 --> 00:32:49,360
What we're doing is we're preparing
together two new advanced care plans

447
00:32:49,470 --> 00:32:57,930
because I have nominated Brian to be my
substitute decision maker and I'm not sure

448
00:32:57,970 --> 00:33:01,300
that legally he could be that person now.

449
00:33:01,970 --> 00:33:06,470
Of course he could be now at
this moment but perhaps later.

450
00:33:07,195 --> 00:33:07,845
Not so.

451
00:33:08,075 --> 00:33:12,055
So that then is a big decision.

452
00:33:12,185 --> 00:33:13,415
Which of our children?

453
00:33:13,950 --> 00:33:20,290
Our three much loved children,
all so different in personality.

454
00:33:20,790 --> 00:33:24,559
Who do we nominate to be
our Advanced Care Planner?

455
00:33:24,820 --> 00:33:26,430
And that's a challenge.

456
00:33:26,820 --> 00:33:30,020
They all say they will
be, if we want them to be.

457
00:33:30,219 --> 00:33:30,944
So who?

458
00:33:30,945 --> 00:33:33,224
Who knows us best?

459
00:33:33,505 --> 00:33:37,975
Who understands our
deeply held values best?

460
00:33:38,055 --> 00:33:47,625
And who understands how we have navigated
our pathway through life more completely?

461
00:33:47,830 --> 00:33:49,360
Well, they all think they do.

462
00:33:52,660 --> 00:33:53,780
I love them for that.

463
00:33:54,300 --> 00:33:59,460
So, that's something we will try and
decide as a family, but it's difficult

464
00:33:59,470 --> 00:34:05,219
to have family discussions sometimes,
because of people's different work lives.

465
00:34:06,050 --> 00:34:09,840
One of our daughters lives in
Perth, so, you know, these are

466
00:34:09,840 --> 00:34:12,300
not easy decisions to make.

467
00:34:12,370 --> 00:34:16,459
The things that you were just mentioning
then are things that are definitely

468
00:34:16,870 --> 00:34:18,690
points that need to be considered.

469
00:34:18,770 --> 00:34:21,390
And also, you've mentioned,
you know, a will.

470
00:34:21,650 --> 00:34:26,770
A will is a very different document to
what an advanced care plan is and I had

471
00:34:26,810 --> 00:34:32,030
a wills and estates lawyer on last year
and he was also talking about the fact

472
00:34:32,120 --> 00:34:38,399
that challenge of finding the right
person within the family who would have

473
00:34:38,410 --> 00:34:44,495
the ability to say if it was appropriate
at the time, okay, my parent does

474
00:34:44,495 --> 00:34:49,515
not wish to have end of life support
and so we'd happy to turn that off.

475
00:34:49,555 --> 00:34:52,765
And it takes a different type of
person in the family to have those

476
00:34:52,794 --> 00:34:57,175
qualities than what it does to
actually have the legal conversations.

477
00:34:57,255 --> 00:34:57,765
Absolutely.

478
00:34:58,405 --> 00:35:05,155
And so I think these matters need to be
handled delicately and with diplomacy

479
00:35:05,505 --> 00:35:12,395
so that one member of the family doesn't
feel marginalized from the processes.

480
00:35:12,665 --> 00:35:15,794
You know, I don't think end
of life planning is easy.

481
00:35:15,915 --> 00:35:20,335
And I think even though my
husband has Alzheimer's.

482
00:35:21,240 --> 00:35:28,980
He is still, I know, perfectly
capable of making informed decisions.

483
00:35:29,380 --> 00:35:36,650
He's still a good critical thinker, but
in the law, he's treated differently.

484
00:35:36,780 --> 00:35:43,940
Those two words, not competent, are like
a dagger to the heart, because That's

485
00:35:43,960 --> 00:35:51,730
what we have valued, not just competency,
but whatever we've done, we've tried

486
00:35:51,800 --> 00:35:58,569
really hard through learning and getting
extra experience to be competent and

487
00:35:58,569 --> 00:36:01,439
then to go to the next stage to deliver.

488
00:36:01,840 --> 00:36:04,750
excellence, particularly in our work.

489
00:36:05,280 --> 00:36:08,860
I don't think we think like
this in the family, you know,

490
00:36:08,900 --> 00:36:10,580
that we have to be excellent.

491
00:36:10,659 --> 00:36:13,700
We are just who we are to the family.

492
00:36:14,030 --> 00:36:17,390
And it seems, Judith, that, you
know, we're talking about, you

493
00:36:17,390 --> 00:36:20,700
know, your stage that you're at
now and with Brian's diagnosis.

494
00:36:20,760 --> 00:36:25,760
However, it seems that the qualities that
you've had with your family of honesty and

495
00:36:25,760 --> 00:36:31,519
integrity and those values, they seem to
have been also based on open conversations

496
00:36:32,259 --> 00:36:34,500
and continuing conversations.

497
00:36:34,510 --> 00:36:38,980
So what would you think we need
to see happening in relation to

498
00:36:38,980 --> 00:36:41,080
the fact that our lives do change?

499
00:36:41,110 --> 00:36:42,619
We do have to spend money.

500
00:36:43,060 --> 00:36:48,199
These are sometimes roadblocks that people
put in the place saying, I can't, you

501
00:36:48,199 --> 00:36:52,540
know, do my end of life planning, or I
can't do a will because then it'll change.

502
00:36:52,810 --> 00:36:56,600
What do you say to those sort of
challenges or roadblocks that people

503
00:36:56,630 --> 00:36:59,790
have in relation to end of life planning?

504
00:36:59,940 --> 00:37:06,600
Well, I think end of life planning is an
investment in your future, so that you

505
00:37:06,670 --> 00:37:13,970
can invest your end of life with some of
the qualities and the activities that you

506
00:37:14,060 --> 00:37:17,830
hold dear, that you hold closest to you.

507
00:37:18,640 --> 00:37:25,590
So, I think that end of life planning
A document should be a living document

508
00:37:25,800 --> 00:37:33,770
and often we'll need several changes,
if not more, depending on when you do

509
00:37:33,770 --> 00:37:41,090
it, because we can never predict when
we will die or how or where or why.

510
00:37:41,090 --> 00:37:45,629
Now I'm sorry, some people
can predict why, but I can't.

511
00:37:45,629 --> 00:37:48,929
I don't know how I'm going to die.

512
00:37:49,920 --> 00:37:50,480
Or when?

513
00:37:50,810 --> 00:37:51,960
Will I be ill?

514
00:37:52,500 --> 00:37:54,150
Will I be in hospital?

515
00:37:54,510 --> 00:38:00,800
Will I fall over and have
to be operated on again?

516
00:38:00,940 --> 00:38:01,800
You know, it'd be

517
00:38:01,800 --> 00:38:02,500
nice.

518
00:38:02,640 --> 00:38:03,889
And you're right, we don't know.

519
00:38:03,889 --> 00:38:08,429
And so Judith, what do you think
you would like to see done in

520
00:38:08,429 --> 00:38:13,189
relation to Australian policies or
systems about end of life planning?

521
00:38:13,399 --> 00:38:19,620
Well, I'd like to see end of life
planning remain an individual choice.

522
00:38:20,390 --> 00:38:26,620
And not ever to be compulsory
because that's when people are

523
00:38:26,690 --> 00:38:32,770
mandating what could, should,
or could not be said or done.

524
00:38:32,830 --> 00:38:39,680
So I would really like it to be
voluntary, but I would like to see

525
00:38:39,900 --> 00:38:50,149
death literacy enhanced and introduced
into programs about human development.

526
00:38:50,640 --> 00:38:59,470
In schools and at university, I think
that within a citizenship framework,

527
00:39:00,050 --> 00:39:07,340
it is possible to talk about the
stages of development of our citizens.

528
00:39:07,629 --> 00:39:14,770
I am still a citizen, still a very
active citizen, and so I would like

529
00:39:14,850 --> 00:39:21,815
my rights under Australian law To be
respected because I'm a passionate.

530
00:39:22,440 --> 00:39:23,190
Australian.

531
00:39:23,540 --> 00:39:30,590
I love my country and I am so
pleased that I happened to be born

532
00:39:30,609 --> 00:39:33,390
here just by accident I imagine.

533
00:39:33,940 --> 00:39:39,060
I think that death literacy
is a really important area.

534
00:39:39,439 --> 00:39:45,200
We're not very accustomed
to death in our society.

535
00:39:45,410 --> 00:39:53,415
People don't have Nowadays an extended
family all living together where

536
00:39:53,525 --> 00:39:58,965
when grandma dies she's laid out
on the kitchen table and washed.

537
00:39:59,135 --> 00:40:00,614
That doesn't happen anymore.

538
00:40:01,195 --> 00:40:07,515
We've moved on from that society
that understood and respected

539
00:40:07,865 --> 00:40:10,815
the stages of death and dying.

540
00:40:11,235 --> 00:40:16,920
It doesn't mean everybody was able
to Be part of that process in a way

541
00:40:16,920 --> 00:40:23,220
though, that reflected their personality
and their wishes and their values.

542
00:40:23,570 --> 00:40:26,510
I'm still learning so much about this.

543
00:40:26,920 --> 00:40:30,400
I just will never be able to learn enough.

544
00:40:30,670 --> 00:40:36,280
But what I'm understanding
better now is the processes.

545
00:40:36,715 --> 00:40:44,575
of dying, which would be at the last
stages, but the absolute necessity for

546
00:40:44,685 --> 00:40:51,995
palliative care to be available when
people are in the end stages of life.

547
00:40:52,475 --> 00:40:56,299
But I'm not talking
about the last two days.

548
00:40:56,660 --> 00:41:02,670
Or the last week, I'm talking
about a medically predicted period

549
00:41:02,670 --> 00:41:10,360
of time where people are able to
be supported and even made more

550
00:41:10,410 --> 00:41:13,590
aware of what is happening to them.

551
00:41:14,610 --> 00:41:16,510
So that they can understand better.

552
00:41:17,110 --> 00:41:22,750
And I think that will help people
say, I want to plan for my end

553
00:41:22,760 --> 00:41:28,940
of life, but I'd like to include
not just family, but friends and

554
00:41:29,379 --> 00:41:35,200
colleagues who become friends in that
process if they wish to be involved.

555
00:41:36,025 --> 00:41:38,025
Not everybody wants to be involved.

556
00:41:38,635 --> 00:41:39,365
It's so true though.

557
00:41:40,325 --> 00:41:43,375
You know, what you were saying
is that, that you're talking

558
00:41:43,375 --> 00:41:45,615
about the, really the life cycle.

559
00:41:45,934 --> 00:41:46,144
Yeah.

560
00:41:46,144 --> 00:41:50,674
And at, at this point in time when
we're in our standard sort of education

561
00:41:50,674 --> 00:41:55,815
system, we cover on birth, I think we
cover on reproductive system, and then

562
00:41:55,815 --> 00:42:00,865
there's nothing about the inevitable
death that we will all experience.

563
00:42:01,745 --> 00:42:03,535
Life ends at retirement.

564
00:42:06,260 --> 00:42:07,930
It does for some people.

565
00:42:08,060 --> 00:42:11,950
Yeah, but the thing is, is that,
you know, death can happen at

566
00:42:11,980 --> 00:42:14,130
any stage during that process.

567
00:42:14,130 --> 00:42:14,970
It can.

568
00:42:15,110 --> 00:42:20,509
And so I think I totally agree
with you about seeing it normalised

569
00:42:20,509 --> 00:42:21,920
as part of the curriculum.

570
00:42:21,920 --> 00:42:24,289
I think that would be
an amazing step forward.

571
00:42:24,680 --> 00:42:29,290
And then it allows you to actually
think about it as much as what

572
00:42:29,290 --> 00:42:32,780
you, Have it as your life, you
know, because it's just part of it.

573
00:42:32,780 --> 00:42:37,890
It's another stage that you experience
and then as you were talking about it

574
00:42:38,010 --> 00:42:42,869
Understanding what those stages could
look like if you go down this path but

575
00:42:42,980 --> 00:42:47,199
there's so many very ways in which we
live and there's so many ways in which

576
00:42:47,200 --> 00:42:52,205
we die and look I think that I love the
idea of putting it in the curriculum.

577
00:42:52,255 --> 00:42:56,465
I think that will encourage
a lot more deaf literacy and

578
00:42:56,475 --> 00:42:58,115
understanding within our community.

579
00:42:58,115 --> 00:42:59,894
So I think that's a great idea, Judith.

580
00:42:59,965 --> 00:43:07,254
I think we're often desensitised to deaf
if we turn on the television, you know.

581
00:43:07,575 --> 00:43:13,335
Particularly if my husband and I love
watching streaming services and he does

582
00:43:13,335 --> 00:43:16,355
like to watch some war movies, you know.

583
00:43:16,635 --> 00:43:17,185
I love it.

584
00:43:17,925 --> 00:43:19,305
Bang, you're dead.

585
00:43:19,865 --> 00:43:24,235
That isn't how people end their
lives very often, thank heavens.

586
00:43:24,425 --> 00:43:26,635
Unless it's during war.

587
00:43:27,385 --> 00:43:32,555
But you see people falling down pretending
to be dead, and you know they're going

588
00:43:32,705 --> 00:43:35,495
to get up and be in the next series.

589
00:43:35,705 --> 00:43:38,214
So, we have been desensitized.

590
00:43:38,274 --> 00:43:44,535
Instead of being sensitized to the
whole process, we don't see that

591
00:43:44,574 --> 00:43:51,950
lead up where Advanced care planning
could be extraordinarily helpful,

592
00:43:52,820 --> 00:43:59,670
particularly if people are unable to
articulate what they would like, then

593
00:43:59,900 --> 00:44:06,100
a supported or designated decision
maker will be making those decisions.

594
00:44:06,170 --> 00:44:08,929
They need to know what you would like.

595
00:44:09,120 --> 00:44:13,270
I mean, my husband and I have
got very different ideas about

596
00:44:13,540 --> 00:44:15,630
how we want our funerals to be.

597
00:44:16,120 --> 00:44:19,080
He doesn't want one and I want a party.

598
00:44:19,380 --> 00:44:20,220
And it's important

599
00:44:20,220 --> 00:44:22,530
to document the
differences even, you know.

600
00:44:22,760 --> 00:44:22,800
Yes.

601
00:44:23,440 --> 00:44:24,429
That's the beauty of it.

602
00:44:24,655 --> 00:44:25,885
That's the whole purpose.

603
00:44:25,965 --> 00:44:26,485
It is.

604
00:44:26,805 --> 00:44:32,605
So what would be your advice or what would
you like to see healthcare professionals

605
00:44:33,205 --> 00:44:38,625
do better in supporting patients making
and documenting their advanced care plans?

606
00:44:38,845 --> 00:44:42,934
But also, as you've said, it's not just
about the advanced care plan, is it?

607
00:44:42,945 --> 00:44:47,585
So how can health professionals
help patients or people have

608
00:44:47,585 --> 00:44:52,295
better conversations about death
and Planning for it, I suppose.

609
00:44:52,345 --> 00:44:56,845
Well, I think in order to have a
reasonable discussion about end

610
00:44:56,975 --> 00:45:02,485
of life planning, you need first
to understand the person's life.

611
00:45:02,605 --> 00:45:09,865
And I think that people's lives are
shaped by so many different factors.

612
00:45:10,114 --> 00:45:13,524
But what is important to
them at the end of life?

613
00:45:13,855 --> 00:45:20,755
I think is their sense of identity,
that they know who they are and

614
00:45:20,755 --> 00:45:23,674
that other people know who they are.

615
00:45:23,675 --> 00:45:28,194
I think that's incredibly important
because the first lesson I learned in

616
00:45:28,195 --> 00:45:32,204
counselling was don't make assumptions.

617
00:45:32,710 --> 00:45:36,680
And don't give advice,
don't give your opinion.

618
00:45:36,840 --> 00:45:42,330
So when someone is assisting you with
end of life planning, it needs to

619
00:45:42,330 --> 00:45:50,379
be a conversation in brief about how
you've lived your life and what values.

620
00:45:51,015 --> 00:45:55,685
have sustained you, because we
all live our life by our values.

621
00:45:55,765 --> 00:46:02,215
But some values are directed with
compassion, with kindness, and with care.

622
00:46:02,414 --> 00:46:08,694
And other values may more centre
on status, power, control.

623
00:46:09,064 --> 00:46:17,280
Now I think that even on a small scale,
we can't assume what people's values are.

624
00:46:17,830 --> 00:46:23,569
And if you actually walk the talk, if
you embed your values in everything you

625
00:46:23,580 --> 00:46:28,050
do, they'll probably be more obvious.

626
00:46:28,419 --> 00:46:35,049
But some people have lived very
quiet, wonderful lives, nurturing

627
00:46:35,049 --> 00:46:37,679
their family, providing for them.

628
00:46:38,270 --> 00:46:40,850
But they have left quiet loves.

629
00:46:40,900 --> 00:46:44,050
I think mine's been a bit
of a noisy one, actually.

630
00:46:44,390 --> 00:46:46,050
Certainly been a busy
one, that's for sure.

631
00:46:46,050 --> 00:46:46,190
Well,

632
00:46:46,190 --> 00:46:53,560
it's been a very busy life and a life
full of love and learning, but also loss.

633
00:46:53,930 --> 00:46:56,750
And all of those things shape people.

634
00:46:56,880 --> 00:47:00,629
Their work shapes them, their life roles.

635
00:47:01,210 --> 00:47:07,780
So, what people, I think, towards
the end of their life would like

636
00:47:07,900 --> 00:47:14,520
to feel is that they have been
understood and loved or accepted.

637
00:47:14,860 --> 00:47:17,840
in their family and in their community.

638
00:47:18,770 --> 00:47:22,490
And when we think, when we use the
term family, I think you'll agree

639
00:47:22,490 --> 00:47:27,790
with me Judith, that family can be
who anyone we choose to be family.

640
00:47:28,290 --> 00:47:28,980
Absolutely,

641
00:47:29,490 --> 00:47:30,140
yes.

642
00:47:30,460 --> 00:47:34,510
We have chosen our son
to be part of our family.

643
00:47:34,590 --> 00:47:39,240
He came into our family
as a 16 year old boy.

644
00:47:39,639 --> 00:47:45,895
And he is as much our son as
our daughters are our daughters.

645
00:47:45,895 --> 00:47:51,030
So this is a choice that
we've made and he's made.

646
00:47:51,490 --> 00:47:57,829
And I think I've always felt
that people choose their family.

647
00:47:58,145 --> 00:48:04,235
Not by blood, but by those
ties which bind us together.

648
00:48:04,235 --> 00:48:07,795
It sounds, ties that bind sound like.

649
00:48:07,935 --> 00:48:11,145
Oh, I think it comes from
a hymn I learnt as a child.

650
00:48:11,425 --> 00:48:15,445
Bless be the ties that bind
our hearts in human love.

651
00:48:15,845 --> 00:48:17,695
That's well said, isn't it?

652
00:48:17,995 --> 00:48:18,755
It is well

653
00:48:18,765 --> 00:48:19,295
said.

654
00:48:19,485 --> 00:48:24,454
And I think one last question I will
ask you before we finish up, Judith,

655
00:48:24,475 --> 00:48:28,445
because it's been a really beautiful
conversation with you, is, you know,

656
00:48:28,445 --> 00:48:33,405
what advice would you give to someone who
wants to start a conversation about end

657
00:48:33,405 --> 00:48:35,134
of life planning with their loved ones?

658
00:48:35,524 --> 00:48:36,644
Where do they start?

659
00:48:36,865 --> 00:48:43,175
Well, what I can say with real
confidence now is that the first thing

660
00:48:43,215 --> 00:48:52,015
I do before what can be a challenging
conversation is to be well prepared.

661
00:48:52,525 --> 00:48:57,065
And there are so many
resources on the internet now.

662
00:48:57,165 --> 00:49:03,425
And the ones where I'm very familiar
is that Palliative Care Death and

663
00:49:03,435 --> 00:49:12,155
Dying Research Centre have a large
Knowledge Hub where there are blogs and

664
00:49:12,275 --> 00:49:20,255
research articles and information to
help people start that conversation.

665
00:49:20,524 --> 00:49:25,205
Because I've always talked
about my death to my kids as

666
00:49:25,205 --> 00:49:27,135
if it's just a matter of time.

667
00:49:27,355 --> 00:49:32,155
Like, not pessimistically
though, optimistically though.

668
00:49:32,505 --> 00:49:37,755
I'm living the best life I can
live, but it will come to an end.

669
00:49:38,065 --> 00:49:43,474
Now, it has been my children,
particularly our two daughters, who've

670
00:49:43,474 --> 00:49:46,135
been reluctant to talk about our death.

671
00:49:46,865 --> 00:49:49,625
So don't think about it, Mum,
you're not going to die yet.

672
00:49:49,885 --> 00:49:51,695
No, but I am going to die.

673
00:49:51,925 --> 00:49:58,745
So, I think I've been the instigator
of conversations with our family.

674
00:49:59,305 --> 00:50:02,574
Whereas sometimes it's a family member.

675
00:50:03,170 --> 00:50:08,620
that needs to instigate these
discussions with the person that

676
00:50:08,620 --> 00:50:11,710
they love or care for deeply.

677
00:50:12,450 --> 00:50:19,229
And I think my approach is always
make sure that you live the end of

678
00:50:19,289 --> 00:50:25,610
your life as you would want to under
whatever circumstances there are.

679
00:50:26,195 --> 00:50:35,755
But that you don't leave a legacy, if you
can help it, of mistrust or hostility,

680
00:50:36,034 --> 00:50:38,725
as I've seen in so many families.

681
00:50:38,895 --> 00:50:45,034
And in particular, my dearest friend,
who died of cancer, did not have

682
00:50:45,074 --> 00:50:51,624
the opportunity to reconcile with
one of her dearest family members.

683
00:50:52,375 --> 00:51:00,075
So, what we can do by end of life
planning is not only look after ourselves,

684
00:51:00,375 --> 00:51:04,745
but we can actually look after the
people that we love through our end

685
00:51:04,745 --> 00:51:12,545
of life planning, so that they don't
have to be burdened with their parents

686
00:51:12,545 --> 00:51:18,469
or best friends, they don't have to
interpret their wishes, they're there.

687
00:51:18,760 --> 00:51:23,690
Plainly stated, what they would like,
and how they would like things to happen.

688
00:51:24,110 --> 00:51:27,689
Now, in some ways, it's a best guess.

689
00:51:27,800 --> 00:51:33,989
But in other ways, if you look at what
people really value in life, I've always

690
00:51:34,000 --> 00:51:42,849
said that what I want is a string quartet
playing Mozart in my room when I am dying.

691
00:51:43,119 --> 00:51:46,600
And I'd like two Monets on
loan from the National Gallery.

692
00:51:47,630 --> 00:51:53,760
On the waltz, I would like
bouquets, bunches of gloriously

693
00:51:53,850 --> 00:51:56,989
David Austin roses everywhere.

694
00:51:57,190 --> 00:52:04,879
Um, I would like my family and
friends and animals there, my pets.

695
00:52:05,485 --> 00:52:10,965
I would like books beside my
bed just in case I had five

696
00:52:11,025 --> 00:52:12,985
more minutes for a quick read.

697
00:52:13,315 --> 00:52:14,315
That is so beautiful.

698
00:52:14,895 --> 00:52:16,124
Is that practical?

699
00:52:16,475 --> 00:52:20,984
Oh, and I'd need a bit of horse
manure sprinkled around the floor

700
00:52:21,415 --> 00:52:23,944
to get that wonderful country aroma.

701
00:52:24,555 --> 00:52:28,075
I probably want A petting zoo sounds good.

702
00:52:28,495 --> 00:52:33,895
Oh Judith, I love the fact that you
are finishing our interview with

703
00:52:33,905 --> 00:52:39,795
that mental imagery of you lying
there with your David Austin roses,

704
00:52:40,205 --> 00:52:42,905
your string quartets and horse poo.

705
00:52:43,050 --> 00:52:43,960
on the ground.

706
00:52:44,150 --> 00:52:46,480
I just think that is absolutely beautiful.

707
00:52:47,300 --> 00:52:48,870
Don't forget the moneys on the wall.

708
00:52:48,870 --> 00:52:49,410
Of course,

709
00:52:49,410 --> 00:52:52,290
sorry, of course, the moneys on the wall.

710
00:52:52,680 --> 00:52:53,850
I do love that.

711
00:52:53,860 --> 00:52:58,500
But it, it really does honour the
fact that, you know, how we live our

712
00:52:58,500 --> 00:53:01,190
lives is the legacy we leave behind.

713
00:53:01,259 --> 00:53:05,910
Because when we die, it's
only the memories we leave.

714
00:53:06,395 --> 00:53:07,655
of when we've been living.

715
00:53:07,925 --> 00:53:13,425
And I think that that's a beautiful way
to end our wonderful interview today.

716
00:53:13,585 --> 00:53:15,025
Oh, Judith, it's been a pleasure.

717
00:53:15,025 --> 00:53:16,645
Thank you so much for being with us.

718
00:53:16,835 --> 00:53:17,515
Thank you.

719
00:53:20,745 --> 00:53:24,154
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720
00:53:24,474 --> 00:53:26,055
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721
00:53:26,995 --> 00:53:31,255
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00:53:42,989 --> 00:53:44,720
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731
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