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There are people who go
through the process and their

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pain isn't that apparent.

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It's almost an invisible pain.

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And that is very, very hard
for some people to understand.

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Well, you know, why do they want to
die when they look all right to me?

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... Read More

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There are people who go
through the process and their

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pain isn't that apparent.

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It's almost an invisible pain.

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And that is very, very hard
for some people to understand.

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Well, you know, why do they want to
die when they look all right to me?

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There can be a lot of resentment.

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Why?

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Why would that person want to leave us?

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You know, why should they?

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It's not fair.

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We all got our problems.

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Why do they get the chance to leave?

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Welcome to don't be caught dead a podcast,
encouraging open conversations about

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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

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to die, 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'm speaking with Jane
Morris, Torres Strait Islander.

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President for Dying Dignity Victoria.

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Dying Dignity Victoria's purpose is to
relieve the stress, helplessness and

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suffering for Victorians with untreatable,
painful or terminal illnesses.

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Thank you for being with us today, Jane.

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That's an absolute pleasure, Catherine.

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Very pleased and very, um,
privileged to have been asked.

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Now, Dying with Dignity in Victoria
was founded in 1974 and it was formerly

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known as the Voluntary Euthanasia
Society of Victoria Incorporated and

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it was originally established as an
all reform and education organisation.

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Can you tell me a little bit more about
the history of the organisation, Jane?

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Right.

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Well,

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in 1974, a couple formed the Voluntary
Euthanasia Society of Victoria.

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They had no medical training and
they decided to form a committee

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simply because they saw a need for
it and nobody else was doing it.

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They didn't have any financial resources.

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And in the beginning, a lot of
the material that they distributed

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actually came from the Euthanasia
Society in England, which

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was quite, um, quite amazing.

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They then traveled to Oxford as a
couple and represented Victoria in what

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was to become the first of the World
Federation of Right to Die Societies.

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Shortly after they came back, Dr.

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Robert Young and the
esteemed bioethicist, Dr.

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Helga Kuser, joined the board and they
managed to persuade the health minister

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at the time to establish a parliamentary
inquiry into dying with dignity.

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They then also looked at establishing
the Medical Treatment Act, and this was

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passed through Parliament in 1988, and
this was a big, a really big success on,

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on the part of Dying with Dignity Victoria
because the medical treatment showed

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people that they did not have to accept
treatment at hospital, in a hospital.

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So if someone was rushed to the
emergency department, for example,

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people have got every right to say,
no, I don't want that treatment.

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The Medical Treatment Act also showed
people that they could appoint an

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enduring power of attorney, which
was very, very important at the time.

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Soon after this, Rodney Syme joined the
board, and as we all know, Rodney Syme led

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the way in Victoria, Australia, the world,
with his advocacy for dying with dignity.

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He worked extremely hard and, um,
In 1995, Helga Kuza was invited

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to Canberra to give a talk to the
Australian Medical Association.

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Now, it so happened that the Chief
Minister of the Northern Territory, by

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chance, was sent a copy of her speech.

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And whilst on holiday, he'd packed a few
papers in his bag, he reached out, found

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this paper, and evidently whilst he was
sitting by a swimming pool, read it.

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He was so enthralled and amazed by what
he'd read, and he instantly thought,

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this is my calling, this is what I'm
going to do in the Northern Territory.

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So it was Helga Cusa that was the
inspiration for, um, Marshal Peron.

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And as we know, the Rights of the
Terminally Ill Act was passed in

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the Northern Territory in 1995.

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Four people managed to
access assisted dying.

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And in 1996, the law was repealed
by the federal government.

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Kevin Andrews bill, it was called
and And the option of an assisted

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death was no longer available
in the Northern Territory.

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But Victoria did contribute a lot to that.

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That's interesting because I had no
idea that any state had done that.

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Yes.

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Yeah.

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Well, the Northern Territory was
the first jurisdiction in the world.

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Wow.

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To have, um, voluntary, well, when we say
they did call it euthanasia and it was

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done by Philip Nitschke and it was quite
controversial at the time because it was

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really non medicalised assisted dying.

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So someone didn't have to have a terminal
illness, they didn't have all this

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eligibility criteria, which we have now.

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And As I said, four people.

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The first person in Australia was
a man called Bob Dent, and his wife

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Judy, since then, has been the sole
advocate in Northern Territory, and

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she's the president of their Northern
Territory Voluntary Euthanasia Society.

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And it just is ironic that the first
place in the whole world to have such

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legislation Looks as though it's, well,
certainly going, well, is definitely

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going to be the last in Australia.

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That was a huge thing.

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Another thing that Rodney Syam and the
Dying with Dignity Victoria organisation

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did, is there was a woman with dementia,
was very ill, she didn't want to live,

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she relied on nasogastric tube feeding.

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And Rodney went to, I think it was
the Supreme Court, and the Supreme

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Court handed down the decision that
being fed by a nasogastric tube or a

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PEG tube wasn't palliative care, it
was medical intervention, and people

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could request to have that stopped.

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So that, that was a very big
triumph for the organisation.

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The next thing then is Rodney spoke to
the public and he, about cases, the many

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cases of people he'd helped die when
the law obviously hadn't been passed.

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He probably helped hundreds.

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There were a couple of
highly publicized cases.

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We look at one, um, with Peter Short
and Peter Short had esophageal cancer.

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He was in terrible amount of pain
and Rodney provided him with the

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medication, whether he actually took it.

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We don't know.

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The other person was Steve Guest, and
I think he lived on the Monnington

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Peninsula, and he spoke on radio,
and once again, he had sophageal

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cancer, was in excruciating amount of
pain, and Rodney helped him to die.

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There were other cases,
and Rodney was amazing.

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He would often help someone,
and then he'd ring the coroner.

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ring the police and say, I've
just helped another person to die.

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Come and get me.

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Well, the police would go and he
said quite often they were just so

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sympathetic with what had happened and
showed so much empathy for the person.

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He was never arrested once he had
to face VCAT over similar charges,

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but there were no charges laid.

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So all this sort of showed the
groundwork that This, an assisted dying

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legislation was desperately needed.

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Doctors were helping people to
help patients in excruciating

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pain to end their lives.

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And I think on the front page of the Age
there was known as the Melbourne Seven,

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and seven doctors came together, they were
happy to go public and be photographed,

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and they stated that they had helped.

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their patients to die, which
was, again, a really big thing.

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And what period are we
talking about, Jane?

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This is probably about 2014, so
it really wasn't that long ago.

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The next thing that Dying with
Dignity helped and really advocated

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for was the Medical Treatment
Planning and Decision Act.

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And this allowed people to make
an advanced care directive.

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An advanced care directive, which was
a legally binding document, and it also

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allowed people to appoint what's called
a medical treatment decision maker.

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And this was someone who would
almost be the person's voice.

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if they became incompetent.

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So this was another important bit
of legislation which contributed

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to increasing the number of
end of life options for people.

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Then we saw in 2015 an inquiry into end of
life choices in Victoria, and Dying with

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Dignity put in a submission, 59 pages.

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And shortly after that, the
ministerial advisory panel was given

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the responsibility of forming a
framework, a draft, for a voluntary

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00:10:54,935 --> 00:10:56,714
assisted dying legislation.

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And as we know, there were
lots of public consultations.

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a lot of debate in parliament.

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It was a very polarizing issue.

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I was very lucky to attend
every single minute of it.

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And to this day, I still get
quite emotional about it.

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Politicians who spoke, some of them
gave the most heart rending stories.

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They selflessly shared stories of the
most horrific deaths of loved ones.

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00:11:26,824 --> 00:11:30,214
And still to this day, some of those
politicians, I really don't know what

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political party they were affiliated with.

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It was the person that really,
really made the impression they were

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allowed to have a conscientious vote.

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It was, it was just wonderful to see
that personalized side of politicians.

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As we all know, you don't really
get an opportunity to see that,

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do

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00:11:52,284 --> 00:11:52,434
you?

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No, um, we had a, we had a 50th
year event, which we celebrated

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at Parliament House two weeks ago,
and we invited a couple of those

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00:12:03,529 --> 00:12:08,599
politicians who've since left
politics, and it was just so emotional.

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In fact, even now I get Yeah, bit of
a lump in my throat thinking about

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those stories, which was so incredibly
persuasive and needed to be told because,

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you know, fortunately not everyone's
gone through such horrific situations.

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And to just hear these politicians talk
with such raw emotion, as I said, was a

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very, very powerful thing to be present.

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As we know, the Victorian
legislation was the first, it

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00:12:40,430 --> 00:12:42,700
passed successfully by four votes.

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It was a very volatile, very emotive
debate, and in order to see the

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legislation passed, a lot of safeguards
and amendments had to be agreed to.

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It really got to the state where the, uh,
either these were agreed to or weren't

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00:13:03,119 --> 00:13:05,180
agreed to and there'd be no legislation.

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And as this was probably one, about
the 50th time VAD legislation had been

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presented before an Australian state in
30 years, Victorians decided, yes, we'd

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take it, no matter what form it was, it
was better to have something The nothing.

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00:13:23,430 --> 00:13:25,600
And that was in 2017?

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00:13:25,800 --> 00:13:31,500
It was in 2017 and then there was an
implementation phase of 18 months.

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So the voluntary assisted dying
became a legal operative end of

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life option on June the 19th, 2019.

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In 2020, Dying with Dignity Victoria,
we organised a conference in Melbourne

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00:13:49,640 --> 00:13:54,790
and we asked representatives from
all the other organisations around

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Australia and it was fantastic.

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We all shared information and what was
wonderful for us and for the other states

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00:14:04,349 --> 00:14:06,909
is that they had so much to learn from us.

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00:14:07,475 --> 00:14:13,075
They were able to see what happened
in our parliament, see the safeguards

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00:14:13,075 --> 00:14:15,345
or amendments we'd had to agree to.

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00:14:15,674 --> 00:14:20,725
And as it happened, we saw this
then rapid succession of passage

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00:14:20,725 --> 00:14:22,534
of legislation in the other states.

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00:14:23,579 --> 00:14:29,760
But each state progressively down the
track had the opportunity to look at and

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00:14:30,030 --> 00:14:38,150
assess how the debate had gone and how
the implementation phase went and then how

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00:14:38,160 --> 00:14:40,620
the actual law was operated, which was.

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00:14:40,975 --> 00:14:41,465
Fantastic.

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00:14:41,545 --> 00:14:45,225
And so what changes have
you seen during that time?

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00:14:45,455 --> 00:14:48,965
Changes with each state,
you mean, in legislation?

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00:14:48,965 --> 00:14:49,485
Changes

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00:14:49,485 --> 00:14:55,484
within Victoria and society
from 2017 to nowadays.

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00:14:56,335 --> 00:15:00,844
Well, I think we'd like to
have seen a lot more changes.

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00:15:01,225 --> 00:15:08,435
As amazing as it is and hard to believe, a
lot of people, and this includes doctors,

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are unaware that voluntary assisted
dying is a legal end of life option.

200
00:15:15,214 --> 00:15:19,385
We would have thought That's
the word would have got around.

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00:15:19,395 --> 00:15:21,865
You know, we do a lot
of public presentations.

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00:15:21,865 --> 00:15:25,675
There's been a lot of media
articles, radio, so forth.

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00:15:26,055 --> 00:15:29,314
And it's quite extraordinary to
think there are still a lot of, a

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00:15:29,314 --> 00:15:31,675
lot of people who are unaware of it.

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00:15:31,675 --> 00:15:32,769
There's.

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00:15:33,400 --> 00:15:37,860
In, um, obviously some groups and
things who've done a lot of advocacy

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00:15:37,860 --> 00:15:41,790
work and they have been talking
about voluntary assisted dying.

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00:15:42,260 --> 00:15:49,800
We've seen changes in as much as we are
members and supporters, the gratitude

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00:15:49,849 --> 00:15:55,809
they've expressed to us that this is
an option, but at the same time there

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is a lot of discontent and frustration.

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00:16:00,050 --> 00:16:07,790
that our laws are so, um, the
eligibility criteria are so stringent.

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00:16:08,050 --> 00:16:12,699
In fact, when the legislation was
passed, our legislation was referred

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00:16:12,699 --> 00:16:15,749
to as the most stringent in the world.

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00:16:16,150 --> 00:16:22,834
And can you talk me through What that
looks like, like what is the process,

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00:16:23,064 --> 00:16:28,314
what is voluntary assisted dying,
what's the eligibility criteria?

216
00:16:29,094 --> 00:16:31,015
If you can talk us through
that, that'd be great.

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00:16:31,314 --> 00:16:31,594
Yeah,

218
00:16:31,854 --> 00:16:32,204
sure.

219
00:16:32,224 --> 00:16:35,425
Well, it's quite a complex
process, so I'll try and

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00:16:35,425 --> 00:16:38,354
summarize it as simply as I can.

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In order to be deemed eligible, one,
an individual has to be over the age

222
00:16:45,260 --> 00:16:51,699
of 18, they have to suffer from a
disease, illness, or medical condition

223
00:16:51,840 --> 00:16:57,969
which is progressive, incurable,
and advanced, and most importantly,

224
00:16:58,260 --> 00:17:04,589
they have to be suffering from
pain that they consider unbearable.

225
00:17:04,599 --> 00:17:04,659
Thank you.

226
00:17:04,930 --> 00:17:12,600
Not the doctor, that they consider to be
unbearable and that cannot be palliated

227
00:17:13,100 --> 00:17:16,400
to a level that they find tolerable.

228
00:17:16,649 --> 00:17:17,349
Okay.

229
00:17:17,569 --> 00:17:23,209
In Victoria, it was decided the
person, in regard to residency

230
00:17:23,729 --> 00:17:28,994
requirements, had to be an Australian
citizen or have sought asylum.

231
00:17:29,304 --> 00:17:35,425
permanent residency, and they
had to have been a resident in

232
00:17:35,425 --> 00:17:37,784
Victoria for the last 12 months.

233
00:17:38,475 --> 00:17:39,524
Ah, okay.

234
00:17:39,785 --> 00:17:40,004
Yep.

235
00:17:41,025 --> 00:17:47,175
So, they're probably just the, the basic
requirements, there's other criteria, but

236
00:17:47,225 --> 00:17:53,224
what happens then if someone goes then to
their doctor, they've been diagnosed with

237
00:17:53,684 --> 00:18:00,100
cancer, for example, they'll go to their
doctor, And they'll say to the doctor,

238
00:18:00,100 --> 00:18:06,630
now, you know, I'm in an enormous amount
of pain, my, I don't think, you know, it

239
00:18:06,630 --> 00:18:12,139
looks as though I've got a very long life
ahead of me, and what are my options?

240
00:18:12,820 --> 00:18:18,290
Now, the doctor in Victoria will
say to that patient, your options

241
00:18:18,380 --> 00:18:25,720
are, they may suggest chemotherapy,
immunotherapy, surgery, pain relief.

242
00:18:26,170 --> 00:18:31,230
But unfortunately in Victoria, the
doctor is not allowed to bring up the

243
00:18:31,239 --> 00:18:33,610
topic of voluntary assisted dying.

244
00:18:34,060 --> 00:18:38,890
This is highly discriminatory because
a lot of people don't know about it.

245
00:18:39,499 --> 00:18:42,270
A lot of people, as we know,
have the white coat syndrome.

246
00:18:42,915 --> 00:18:47,014
They go to the doctor and whatever
the doctor says, they take as gospel,

247
00:18:47,294 --> 00:18:51,374
and they would never ever dare say,
but isn't there something else?

248
00:18:51,514 --> 00:18:55,124
A lot of people don't have access
to the internet, so they're just

249
00:18:55,165 --> 00:18:57,485
unaware of voluntary assisted dying.

250
00:18:57,965 --> 00:19:02,615
What must happen in Victoria is it must
be up to the patient to say to the doctor.

251
00:19:03,550 --> 00:19:06,700
But I want to know about
voluntary assisted dying.

252
00:19:07,250 --> 00:19:11,610
South Australia's the same and
it's called the gag clause.

253
00:19:12,090 --> 00:19:14,150
Other states have noticed this.

254
00:19:14,179 --> 00:19:20,260
They, in their legislation, have said
that the doctor may provide the option

255
00:19:20,310 --> 00:19:26,009
of EAD on the condition that they also
provide the option of palliative care.

256
00:19:26,360 --> 00:19:33,280
So, that, that, we see that as a
huge, huge negative about the process.

257
00:19:33,710 --> 00:19:38,060
And as I said, highly
discriminatory and highly unfair.

258
00:19:38,290 --> 00:19:43,179
We're going back now to the process
where the person does go to their

259
00:19:43,179 --> 00:19:46,589
doctor and they say, yes, but what
about voluntary assisted dying?

260
00:19:46,590 --> 00:19:49,570
As they're going out the door and the
doctor says, you want to know that?

261
00:19:49,835 --> 00:19:51,045
I can talk about that now.

262
00:19:51,085 --> 00:19:52,215
Come back and sit down.

263
00:19:52,685 --> 00:20:00,025
So the person will get some information
and they will then talk about it

264
00:20:00,025 --> 00:20:05,365
with their doctor and they can then
make their first request, a verbal

265
00:20:05,384 --> 00:20:07,645
request for voluntary assisted dying.

266
00:20:08,015 --> 00:20:13,425
And the doctor will then see them at
a later stage and make an assessment.

267
00:20:13,870 --> 00:20:14,290
of them.

268
00:20:14,940 --> 00:20:21,379
If this doctor agrees that they're
eligible for the assisted dying process,

269
00:20:21,740 --> 00:20:26,829
the doctor becomes the coordinating
practitioner, and he will then let the

270
00:20:27,289 --> 00:20:34,615
patient know a few days after, yes,
I do think you're eligible, and They

271
00:20:34,965 --> 00:20:39,275
advance to the next stage, which is
where they see another doctor has to be

272
00:20:39,815 --> 00:20:45,924
a specialist in the underlying disease
that the patient's suffering from.

273
00:20:46,195 --> 00:20:50,975
And this is another fault with the
Victorian legislation, because this was

274
00:20:50,975 --> 00:20:53,644
an interpretation of the legislation.

275
00:20:53,975 --> 00:20:59,575
It was said that the doctor had to have
experience in the underlying disease,

276
00:21:00,055 --> 00:21:05,914
but at no stage did it say specialist,
but the Victorian legislation was

277
00:21:06,335 --> 00:21:11,525
unfortunately interpreted like this,
and it makes it very, very difficult

278
00:21:11,565 --> 00:21:16,104
because people living in the country
don't have access to neurologists.

279
00:21:16,895 --> 00:21:20,784
They, there are a lot of specialties,
they means they need to come

280
00:21:20,805 --> 00:21:23,835
down to Melbourne to see them.

281
00:21:24,065 --> 00:21:29,815
My thinking is also just that the
length of time to get an appointment.

282
00:21:29,815 --> 00:21:31,665
Absolutely, absolutely.

283
00:21:31,705 --> 00:21:36,225
Just so many, there are so many
negatives in the process that work

284
00:21:36,735 --> 00:21:41,985
against some people and particularly
people living in rural regional areas.

285
00:21:42,465 --> 00:21:45,244
Anyway, when and if they
get the appointment.

286
00:21:45,560 --> 00:21:46,520
with the specialist.

287
00:21:46,730 --> 00:21:53,659
The specialist will then do the secondary
assessment and if they also agree that

288
00:21:53,929 --> 00:22:02,139
the patient is eligible, they will then
fill out a form and that patient is

289
00:22:02,139 --> 00:22:05,899
then told that the coordinating doctor
and the consulting doctor both agree.

290
00:22:06,460 --> 00:22:10,870
The patient is then asked to go
back to the coordinating doctor

291
00:22:10,960 --> 00:22:16,770
where they provide their signature
in the form of written consent.

292
00:22:17,270 --> 00:22:22,655
And this has to be witnessed
by two independent individuals.

293
00:22:23,035 --> 00:22:26,865
And for some people it is very,
very hard to find these individuals

294
00:22:26,865 --> 00:22:31,985
because not everyone wants people to
know that they are going through the

295
00:22:31,985 --> 00:22:34,504
voluntary assisted dying process.

296
00:22:34,664 --> 00:22:40,174
So, Dying with Dignity Victoria very
quickly, um, became aware of this problem

297
00:22:40,655 --> 00:22:46,534
and we set up, basically with our board,
it started with board members, we set up

298
00:22:46,574 --> 00:22:50,635
a little pool of witnesses who were happy.

299
00:22:51,140 --> 00:22:56,810
To go and sign, be there as witnesses
to this signing of the document.

300
00:22:57,340 --> 00:22:59,460
which was just fantastic.

301
00:22:59,650 --> 00:23:02,280
It has been such a successful program.

302
00:23:02,280 --> 00:23:04,570
In fact, it's been too successful.

303
00:23:04,969 --> 00:23:09,449
And after five years, we're, I
think, just about to do our 500th

304
00:23:10,059 --> 00:23:12,380
witnessing, which is quite incredible.

305
00:23:12,859 --> 00:23:18,479
Anyway, once that is done,
all the paperwork is then sent

306
00:23:18,570 --> 00:23:21,399
into the, um, secretarious.

307
00:23:22,235 --> 00:23:28,075
And it is, um, all looked through, make
sure every I's dotted, every T's crossed.

308
00:23:28,275 --> 00:23:33,345
And if the health department is happy
with everything that's been done,

309
00:23:33,354 --> 00:23:35,844
the patient is then sent a permit.

310
00:23:36,314 --> 00:23:38,705
As one lady said to
me, I can't believe it.

311
00:23:38,744 --> 00:23:41,825
You even need to get a
permit to die these days.

312
00:23:42,765 --> 00:23:42,965
How

313
00:23:43,135 --> 00:23:46,125
long does this process take on average?

314
00:23:46,365 --> 00:23:50,485
Well, it can theoretically
could be done in 10 days, but

315
00:23:51,165 --> 00:23:52,895
Usually it's a couple of weeks.

316
00:23:53,155 --> 00:23:53,665
Yeah, right.

317
00:23:54,024 --> 00:23:59,245
Once the person has the permit,
the doctor can then write out

318
00:23:59,695 --> 00:24:03,114
the script for the VAD substance.

319
00:24:03,345 --> 00:24:06,675
The script is then sent to
the Alfred Hospital, where

320
00:24:06,675 --> 00:24:08,495
the centralised pharmacy is.

321
00:24:08,524 --> 00:24:11,195
We only have one pharmacy in Victoria.

322
00:24:11,604 --> 00:24:17,254
And when the individual is then ready,
To receive the medication, they ring

323
00:24:17,254 --> 00:24:25,634
the Alfred Hospital and two pharmacists
must deliver it in person to the

324
00:24:25,655 --> 00:24:28,935
patient's home, which is a huge thing.

325
00:24:29,025 --> 00:24:32,884
And during COVID, this became
quite problematic because the

326
00:24:33,305 --> 00:24:34,965
pharmacy were on a skeleton staff.

327
00:24:36,524 --> 00:24:40,445
And as you can imagine, you know,
some distances and you can travel

328
00:24:40,475 --> 00:24:42,534
up to five hours in Victoria.

329
00:24:42,864 --> 00:24:45,044
Yeah, I'm just thinking regional layer is.

330
00:24:45,074 --> 00:24:45,344
Yes.

331
00:24:45,974 --> 00:24:49,894
It was a huge waiting time and
there were some horrific cases

332
00:24:49,894 --> 00:24:52,164
of people waiting and waiting.

333
00:24:52,394 --> 00:24:52,884
It was.

334
00:24:53,249 --> 00:24:54,139
Very unfair.

335
00:24:54,600 --> 00:24:59,059
The other thing that I didn't mention
is, in Victoria, the default method

336
00:24:59,560 --> 00:25:06,010
of assisted dying is for a person
to ingest the medication themselves.

337
00:25:06,669 --> 00:25:11,375
Now, for some reason, If a person is
unable to do that, and I'm talking

338
00:25:11,395 --> 00:25:15,625
about perhaps motor neuron disease
or some disease, illness, where a

339
00:25:15,625 --> 00:25:21,004
person can't physically raise the
medicine, the cup, to their mouth,

340
00:25:21,035 --> 00:25:27,650
which they have to do themselves, the
doctor on can then administer the VAD

341
00:25:28,260 --> 00:25:31,360
substance intravenously via a cannula.

342
00:25:31,740 --> 00:25:32,430
Okay, so that

343
00:25:32,430 --> 00:25:32,580
is

344
00:25:32,760 --> 00:25:33,040
permitted.

345
00:25:33,679 --> 00:25:34,069
Yes.

346
00:25:34,749 --> 00:25:39,910
And then once the person receives
the oral medication, it comes in

347
00:25:39,910 --> 00:25:41,670
the form of a little black box.

348
00:25:42,310 --> 00:25:45,750
We just locked with a key and
during the debate, people would

349
00:25:45,750 --> 00:25:47,150
say, well, where'd they put the key?

350
00:25:47,150 --> 00:25:50,300
They should have another box to
hide the keys or this and that.

351
00:25:50,330 --> 00:25:53,740
It was, you know, quite,
quite unnecessary.

352
00:25:53,740 --> 00:25:54,146
Caught up

353
00:25:54,146 --> 00:25:54,899
in all the little

354
00:25:54,899 --> 00:25:55,639
details.

355
00:25:55,689 --> 00:25:59,460
Well, when you think of the average
person's laundry, I mean, there are so

356
00:25:59,600 --> 00:26:02,000
many toxic chemicals in a household.

357
00:26:02,570 --> 00:26:06,879
And to have all these locked keys
and things, anyway, look, that's,

358
00:26:07,010 --> 00:26:12,879
that's the way it is, but the person
receives the lockbox and they can keep

359
00:26:12,879 --> 00:26:14,970
it, well, for as long as they want.

360
00:26:15,539 --> 00:26:21,840
And statistics have shown that a third
of people never ever take the medication.

361
00:26:22,270 --> 00:26:27,960
The relief they get, the feeling of
empowerment, of having that medication

362
00:26:27,960 --> 00:26:32,800
there, knowing that if their pain
gets too bad, they don't have to

363
00:26:32,800 --> 00:26:34,500
go through some arduous process.

364
00:26:34,500 --> 00:26:36,199
They don't have to go and visit a doctor.

365
00:26:36,520 --> 00:26:38,200
They've got that medication there.

366
00:26:38,489 --> 00:26:43,339
And I think, I think that's a
very, very important, um, aspect

367
00:26:43,340 --> 00:26:47,730
of the whole process, the power
it gives to the individual.

368
00:26:48,125 --> 00:26:53,705
And that, because I'm just thinking
about when I've suffered pain, it's

369
00:26:53,705 --> 00:26:58,685
generally in the middle of the night,
in the darkest hours of the morning.

370
00:26:59,125 --> 00:27:03,694
So, I could imagine it would be
quite a relief to know that there

371
00:27:03,694 --> 00:27:07,314
is an option there when someone
has a life limiting illness.

372
00:27:07,909 --> 00:27:09,919
and they are experiencing that.

373
00:27:10,159 --> 00:27:11,149
Absolutely.

374
00:27:11,310 --> 00:27:15,379
And I think just the fact that we've got
voluntary assisted dying legislation in

375
00:27:15,379 --> 00:27:20,989
Victoria provides that same sort of relief
to people, even if they're not sick.

376
00:27:21,330 --> 00:27:25,399
People who've got history of motor
neuron disease in their family, people

377
00:27:25,669 --> 00:27:31,730
who've got histories of other hideous
diseases, obviously are consumed with

378
00:27:31,870 --> 00:27:34,300
concern that that'll be them one day.

379
00:27:34,620 --> 00:27:40,770
But now at least they've got that
small comfort of knowing that if they

380
00:27:40,790 --> 00:27:46,330
do succumb to this disease, they do
have the option of ending their life

381
00:27:46,380 --> 00:27:53,420
and not having to endure a prolonged,
unbearable, painful death like they may

382
00:27:53,420 --> 00:27:56,060
have witnessed with loved ones previously.

383
00:27:56,285 --> 00:28:01,895
And the thing that I recall about
when it was going in the front

384
00:28:02,155 --> 00:28:07,945
pages of the newspaper was the
amount of celebrity support for

385
00:28:07,955 --> 00:28:10,594
the campaign across the nation.

386
00:28:11,105 --> 00:28:14,504
I don't think I've seen
anything like that.

387
00:28:15,205 --> 00:28:16,215
sense, to be honest.

388
00:28:16,274 --> 00:28:17,895
Yes, look, it's fantastic.

389
00:28:17,935 --> 00:28:22,294
I mean, we, Dying with Dignity
Victoria had campaigned as,

390
00:28:22,385 --> 00:28:24,725
you know, since, since 1974.

391
00:28:25,244 --> 00:28:30,165
And I always liken it to we
were the first domino to fall.

392
00:28:30,364 --> 00:28:34,235
Now we'd done so much work to
unsettle that first domino.

393
00:28:35,165 --> 00:28:40,085
But along came Go Gentle Australia
and Andrew Denton and he gave it

394
00:28:40,085 --> 00:28:45,225
that celebrity nudge and the thing
fell over in a matter of seconds.

395
00:28:45,525 --> 00:28:48,055
So it was wonderful to have that.

396
00:28:48,505 --> 00:28:50,904
Um, you mentioned celebrities.

397
00:28:50,905 --> 00:28:53,785
I mean, that is happening a
lot in the UK at the moment.

398
00:28:54,260 --> 00:29:00,480
I think the daughter of Diana Rigg, we've
got Dame Esther, Esther Ranson, I think

399
00:29:00,480 --> 00:29:08,470
it is, Archbishop Lord Carey, who was
vehemently against VAD, changed his mind.

400
00:29:08,879 --> 00:29:12,900
And they're, they're probably some of
the most powerful advocates, people who

401
00:29:12,900 --> 00:29:20,320
have spoken out, saying no, they disagree
with it, to then publicly back down and

402
00:29:20,320 --> 00:29:27,179
say, I've changed my mind is a very,
very powerful form of advocacy, I think.

403
00:29:27,429 --> 00:29:30,969
And given you've just had
your 50th anniversary.

404
00:29:31,239 --> 00:29:31,519
Yes.

405
00:29:31,709 --> 00:29:34,799
What are some of the milestones
you've celebrated, Jane?

406
00:29:35,069 --> 00:29:41,710
Well, it so happened that on the
50th anniversary, we managed to book

407
00:29:41,770 --> 00:29:44,710
Parliament House on June the 19th.

408
00:29:45,060 --> 00:29:50,870
which was exactly five years to the
day since the implementation of VAD.

409
00:29:51,210 --> 00:29:52,240
Oh, amazing.

410
00:29:52,610 --> 00:29:56,670
And Parliament was sitting,
so we got a few MPs coming in.

411
00:29:57,590 --> 00:29:59,850
I think we've, um, achieved a lot.

412
00:29:59,850 --> 00:30:05,700
As I said, we've helped get those pieces
of legislation passed in Parliament.

413
00:30:06,180 --> 00:30:10,600
I think we're starting to help
people with death literacy.

414
00:30:11,009 --> 00:30:14,460
I think the talk of death is
now becoming more commonplace.

415
00:30:15,100 --> 00:30:20,890
At the family table, we have developed
and, um, at the moment it hasn't

416
00:30:20,890 --> 00:30:25,600
been officially launched, but a
young ambassador program, which

417
00:30:25,629 --> 00:30:28,200
I am so very, very excited about.

418
00:30:28,499 --> 00:30:33,609
Because when we go and we give
presentations to the public, explaining

419
00:30:33,609 --> 00:30:38,185
about voluntary assisted dying and
advanced care directives, We often

420
00:30:38,185 --> 00:30:42,685
find that it's a sea of elderly
people, Zimmer frames, walking sticks,

421
00:30:43,265 --> 00:30:45,395
wheelchairs, which is fantastic.

422
00:30:45,800 --> 00:30:51,320
But as we know, unfortunately,
anyone over the age of 18 can be

423
00:30:51,320 --> 00:30:57,130
diagnosed with a terminal illness
or be in some terrible car accident.

424
00:30:57,490 --> 00:31:02,650
They need to be aware that these things
can happen to them and that by simply

425
00:31:02,650 --> 00:31:09,390
talking about it, And making plans in
the event that this does happen, they

426
00:31:09,390 --> 00:31:16,879
can help their family so much because
nothing is worse than when someone,

427
00:31:16,910 --> 00:31:21,389
it doesn't matter if they're old or
young, is suddenly rendered unconscious.

428
00:31:22,125 --> 00:31:24,395
And people have no idea of their wishes.

429
00:31:24,685 --> 00:31:26,445
We've seen a lot of infighting.

430
00:31:26,455 --> 00:31:28,725
There's been several cases in the U.

431
00:31:28,725 --> 00:31:28,915
S.

432
00:31:29,455 --> 00:31:35,255
which went on and on for years of,
um, one particular woman, I'm sorry,

433
00:31:35,255 --> 00:31:40,195
I can't remember her name, that was
in a car accident and her fiancé

434
00:31:40,205 --> 00:31:44,455
said, well, if ever she was rendered
unconscious, like, in a permanent

435
00:31:44,465 --> 00:31:47,695
state, she would have remained
like that for the rest of her life.

436
00:31:47,805 --> 00:31:49,345
She would have wanted life support.

437
00:31:49,345 --> 00:31:49,899
She would have wanted life support.

438
00:31:50,180 --> 00:31:51,160
to be removed.

439
00:31:51,610 --> 00:31:57,470
Her parents were very devout Christians,
and they said no, they wanted her to live.

440
00:31:57,740 --> 00:32:02,440
So I think the life support was removed,
then it was back the next day, then

441
00:32:02,440 --> 00:32:04,140
they went to the court the next day.

442
00:32:04,530 --> 00:32:10,019
And there are cases like that, whereas
if this poor woman had simply written

443
00:32:10,399 --> 00:32:15,280
out and stated her wishes, or what we're
even starting to suggest these days,

444
00:32:15,290 --> 00:32:22,510
even make a video of what you want, I
think a video is More powerful and it

445
00:32:22,590 --> 00:32:29,065
can't be sort of interpreted ambiguously
and if you state what you want And more

446
00:32:29,065 --> 00:32:36,435
importantly, what you don't want, I
think that's, um, that is very important.

447
00:32:36,795 --> 00:32:41,815
And also for the doctors who are
looking after you, a lot of them

448
00:32:42,295 --> 00:32:47,594
find it very hard to make calls
on what type of care to deliver.

449
00:32:48,125 --> 00:32:51,455
And it would be much easier for
them if they could confidently

450
00:32:51,485 --> 00:32:54,245
deliver care to you that they know.

451
00:32:56,580 --> 00:33:00,370
And tell me Jane, what's the
difference between an Advanced Care

452
00:33:00,370 --> 00:33:02,300
Directive and an Advanced Care Plan?

453
00:33:03,080 --> 00:33:03,830
Right, well that's a

454
00:33:03,849 --> 00:33:05,130
very good question.

455
00:33:05,300 --> 00:33:13,689
An Advanced Care Directive is a legally
binding document and it is usually

456
00:33:13,789 --> 00:33:17,500
witnessed by a doctor and another person.

457
00:33:18,770 --> 00:33:25,090
It is made of two parts, and the first
part is called an instructional directive.

458
00:33:25,640 --> 00:33:29,870
Now this is usually made by someone
who may have, and here I am using

459
00:33:29,890 --> 00:33:34,689
motor neurone disease again, that
may have motor neurone disease.

460
00:33:35,079 --> 00:33:35,949
So, that's all I've got to say.

461
00:33:36,380 --> 00:33:42,440
They will fill out the medical
and provide medical directives of

462
00:33:42,440 --> 00:33:47,610
what they would like or what they
wouldn't want, strict instructions

463
00:33:47,630 --> 00:33:51,080
regarding specific medical treatment.

464
00:33:51,569 --> 00:33:57,530
They may, for example, someone might say
that they don't want to be resuscitated.

465
00:33:58,000 --> 00:34:03,650
They might be a type 1 diabetic who
might say, if I get to that stage,

466
00:34:04,075 --> 00:34:05,735
I don't want to take my insulin.

467
00:34:06,365 --> 00:34:08,505
They may be on renal dialysis.

468
00:34:08,575 --> 00:34:12,035
They would say, please, you
know, stop the dialysis.

469
00:34:12,345 --> 00:34:17,025
They may be on medication for
blood pressure, cardiac issues.

470
00:34:17,365 --> 00:34:23,554
There's really a plethora of reasons,
but people would say directly, tick

471
00:34:23,554 --> 00:34:25,749
a box, saying, I do not want insulin.

472
00:34:25,990 --> 00:34:29,800
That particular treatment,
knowing it will end my life.

473
00:34:30,240 --> 00:34:36,590
The other part of the Advanced Care
Directive is the Values Directive.

474
00:34:37,030 --> 00:34:42,110
Now, this doesn't give specific
instructions, like the first part,

475
00:34:42,520 --> 00:34:49,430
this is more about the actual person,
their values, what they want in

476
00:34:49,430 --> 00:34:52,060
life, or the type of death they want.

477
00:34:52,100 --> 00:34:54,349
It's more just of a general, you know.

478
00:34:54,760 --> 00:35:01,230
Just generalists expressing their
wishes of the type of lifestyle,

479
00:35:01,230 --> 00:35:05,440
the type of life, and the type of
death they'd like to experience.

480
00:35:05,959 --> 00:35:12,260
When a values directive especially
is made, often a medical treatment

481
00:35:12,279 --> 00:35:14,390
decision maker is appointed.

482
00:35:14,980 --> 00:35:19,540
And this person is someone who
knows the person really well and

483
00:35:19,540 --> 00:35:22,020
will go in and advocate for them.

484
00:35:22,750 --> 00:35:27,639
And what I'm trying to say here is
often your loved one would be the

485
00:35:27,650 --> 00:35:32,990
worst person to have advocating for you
because they don't want to see you die.

486
00:35:33,279 --> 00:35:35,350
They will do everything to keep you alive.

487
00:35:35,640 --> 00:35:38,990
So you need a friend with sort of,
dare I say, a bit of bull terrier.

488
00:35:39,350 --> 00:35:43,080
about them, who's going to be
outspoken and say to the doctors,

489
00:35:43,090 --> 00:35:44,980
no, she said she didn't want that.

490
00:35:45,020 --> 00:35:51,100
She didn't want to remain in bed and
need to be toileted and spoon fed.

491
00:35:51,420 --> 00:35:55,739
So it is a very important part of the
Advanced Care Directive to do that.

492
00:35:56,220 --> 00:36:02,010
Now, the Advanced Care Plan can be
made by someone, but most commonly

493
00:36:02,050 --> 00:36:04,680
we see families making these.

494
00:36:05,225 --> 00:36:09,765
for a person who perhaps is
about to enter a nursing home.

495
00:36:10,355 --> 00:36:12,895
And it's a bit like a values directive.

496
00:36:13,285 --> 00:36:17,535
It's more or less about
the type of care they wish.

497
00:36:17,785 --> 00:36:22,255
It's care that's centered
on that unique person.

498
00:36:22,790 --> 00:36:28,070
And tries to meet the needs of
that unique individual, rather

499
00:36:28,070 --> 00:36:32,550
than, as I said, including, you
know, specific medical instruction.

500
00:36:32,890 --> 00:36:38,739
So, what is your recommendation to
someone who's deciding, what do I do?

501
00:36:39,460 --> 00:36:40,049
Make up your

502
00:36:40,050 --> 00:36:43,590
mind that you're going to do
an advanced care directive.

503
00:36:43,720 --> 00:36:44,920
Talk about it.

504
00:36:45,050 --> 00:36:46,300
Rodney Syam.

505
00:36:47,215 --> 00:36:53,885
Every time he talked or gave presentations
to the public, he would sort of end every

506
00:36:53,885 --> 00:36:58,415
sentence and begin every sentence with,
talk, communicate, talk, communicate,

507
00:36:58,785 --> 00:37:02,455
talk to your family, talk to your
postman, communicate with your friends,

508
00:37:02,684 --> 00:37:06,245
and express your wishes to everyone.

509
00:37:06,540 --> 00:37:12,070
When people write their advanced care
directive or their advanced care plan, we

510
00:37:12,070 --> 00:37:16,470
tell them to make as many copies as they
can, hand one out to their neighbours,

511
00:37:16,500 --> 00:37:20,850
hand one out to their loved ones, take it
to the hospital, take it to the doctor,

512
00:37:21,180 --> 00:37:23,570
upload it to your My Health Record.

513
00:37:23,900 --> 00:37:27,710
And I've even known people who
stick them on the fridge and someone

514
00:37:27,710 --> 00:37:31,010
once said they had it, um, stuck
on the back of their front door.

515
00:37:31,020 --> 00:37:33,600
So if the ambulance came and
then had to take them out,

516
00:37:33,640 --> 00:37:35,709
they'd see this great big sign.

517
00:37:36,190 --> 00:37:37,490
on the back of the door.

518
00:37:38,020 --> 00:37:43,380
So I think everyone, as I said, just
needs to be realistic and think,

519
00:37:43,380 --> 00:37:46,030
yes, something happened to me.

520
00:37:46,310 --> 00:37:52,250
And by writing an advanced care directive
and talking about it, it's helping others.

521
00:37:52,585 --> 00:37:55,685
It's helping the doctors, but more
importantly, it's helping your

522
00:37:55,685 --> 00:38:01,305
family and friends for them to make
decisions according to your wishes.

523
00:38:01,565 --> 00:38:06,335
That's very good advice, given I
personally have experienced a car

524
00:38:06,335 --> 00:38:11,675
accident and how things can change very
quickly in a very short period of time.

525
00:38:12,165 --> 00:38:15,975
Now tell me, how can people learn?

526
00:38:16,410 --> 00:38:21,050
access the services of such
witnessing that you were mentioning?

527
00:38:21,320 --> 00:38:25,990
And what other services do Dying
with Dignity Victoria offer?

528
00:38:26,249 --> 00:38:28,639
Yes, well look, we do quite a few.

529
00:38:29,260 --> 00:38:33,099
First of all, we explain
about end of life options.

530
00:38:33,139 --> 00:38:37,746
We've got a wonderful website, and on
our website you can look up advanced

531
00:38:37,746 --> 00:38:42,800
care directives, voluntary assisted
dying, We have personal stories

532
00:38:42,990 --> 00:38:44,340
that people have written to us.

533
00:38:44,490 --> 00:38:48,250
We have a section where people
have written in questions, which

534
00:38:48,250 --> 00:38:52,340
we've had doctors on the board
answer, and there's little videos.

535
00:38:52,930 --> 00:38:58,485
We, I suppose most importantly,
Go out into the public, and as I

536
00:38:58,485 --> 00:39:07,035
said, we visit probus, clubs, U3As,
councils, retirement villages, and

537
00:39:07,465 --> 00:39:13,785
we give a presentation, a PowerPoint
presentation on advanced care directives.

538
00:39:14,225 --> 00:39:17,105
and also voluntary assisted dying.

539
00:39:17,375 --> 00:39:23,745
These are usually absolutely fantastic
and the interaction we have with

540
00:39:23,745 --> 00:39:29,304
people after and the questions and
the stories we hear just makes it

541
00:39:29,305 --> 00:39:33,645
all so worthwhile and just creates
that personal, um, you know, touch.

542
00:39:33,645 --> 00:39:38,520
We're not just Doing our work, we're
out there seeing the people and also

543
00:39:38,640 --> 00:39:43,900
more importantly, hearing what they
want and what is wrong with legislation

544
00:39:44,490 --> 00:39:50,159
and the obstacles people are up against
and impediments, just being in aged

545
00:39:50,159 --> 00:39:52,209
care homes, being in nursing homes.

546
00:39:52,750 --> 00:39:53,470
It's wonderful.

547
00:39:53,480 --> 00:39:56,120
So presentations are highly valued.

548
00:39:56,600 --> 00:40:00,900
We also, um, as I said,
provide the witnessing program.

549
00:40:01,640 --> 00:40:04,850
which is, has just been too successful.

550
00:40:05,360 --> 00:40:11,449
Some people find it very hard to attend,
as I said, um, to visit their doctor.

551
00:40:12,250 --> 00:40:20,589
And we do have advice on two forms
of transport people can use, and one

552
00:40:20,650 --> 00:40:24,930
is Angel Flight Australia, and it's
one I'd never actually heard about.

553
00:40:25,580 --> 00:40:30,730
And it's pilots who are wanting to get
up their hours and they have their own

554
00:40:30,730 --> 00:40:36,580
planes and they volunteer their time in
their plane and will transport a person

555
00:40:36,640 --> 00:40:38,800
free of charge to that destination.

556
00:40:39,219 --> 00:40:43,250
Now, I've got to emphasize there,
they are not trained, there is no

557
00:40:43,299 --> 00:40:45,669
medical equipment on the plane.

558
00:40:45,950 --> 00:40:51,210
But if someone wants to get from A to B
for an assessment or a consultation with

559
00:40:51,210 --> 00:40:54,720
a doctor, I think it's a fabulous idea.

560
00:40:55,180 --> 00:40:56,000
It's amazing.

561
00:40:56,289 --> 00:41:01,080
The other thing is the Victorian
Patient Transport Assistance Scheme.

562
00:41:01,380 --> 00:41:05,850
And this was something else I had never
ever heard of, but it is for people.

563
00:41:06,990 --> 00:41:11,160
Who need to see a specialist,
and as we're saying, you usually

564
00:41:11,160 --> 00:41:13,630
end up in the city for that.

565
00:41:14,070 --> 00:41:19,620
And they will be subsidized for traveling.

566
00:41:20,099 --> 00:41:24,554
Um, I think it's not a straight on,
we'll have to actually look this up.

567
00:41:24,554 --> 00:41:30,329
If they live in a rural or
regional area that's more than 100

568
00:41:30,330 --> 00:41:31,900
kilometers away from Melbourne.

569
00:41:32,390 --> 00:41:35,550
And that's a fantastic,
um, initiative, I think.

570
00:41:36,135 --> 00:41:42,835
We also, the, um, I haven't mentioned
yet, but one of the major, major, major,

571
00:41:42,905 --> 00:41:50,925
or the spine of the whole BAD process is
the Victorian Voluntary Care Navigators.

572
00:41:51,184 --> 00:41:56,725
And this is a group of health
professionals, and they started up

573
00:41:56,735 --> 00:42:02,524
at the Peter MacCallum Hospital, and
they are like the centre, the hub

574
00:42:02,524 --> 00:42:07,744
of all the questions, either from
doctors, patients, we ask them, and

575
00:42:07,745 --> 00:42:10,155
they have been absolutely amazing.

576
00:42:10,414 --> 00:42:17,065
They now have these navigators in
every regional health region, and

577
00:42:17,385 --> 00:42:23,274
one path that they can help people
with is arrange travel packages.

578
00:42:23,800 --> 00:42:26,290
Some people, you know, might
cover the expense of coming

579
00:42:26,290 --> 00:42:28,350
in the train or whatever.

580
00:42:28,530 --> 00:42:32,629
So look, there are options for
people, and it's great that we

581
00:42:32,629 --> 00:42:34,590
can have them listed on our site.

582
00:42:34,660 --> 00:42:37,349
And it's not just sort of word of mouth.

583
00:42:37,440 --> 00:42:41,379
Someone happens to hear about
something that they can look up.

584
00:42:41,859 --> 00:42:49,390
We also have on our website, something
we thought was very exciting.

585
00:42:49,450 --> 00:42:56,105
And we have a little map And on it are
some little dots and they're the names

586
00:42:56,185 --> 00:43:03,325
of aged care facilities which will allow
voluntary assisted dying to occur there.

587
00:43:03,685 --> 00:43:08,574
Now Victoria was one of the only,
I think Victoria and Western

588
00:43:08,574 --> 00:43:13,574
Australia were the only states
that's legislation did not look at

589
00:43:13,634 --> 00:43:16,344
institutional conscientious objection.

590
00:43:16,845 --> 00:43:22,065
And as many palliative care and aged
care facilities are faith based.

591
00:43:22,605 --> 00:43:26,805
They showed absolutely no interest
in voluntary assisted dying.

592
00:43:27,235 --> 00:43:32,515
Many actually put out policy statements at
the time saying they would not allow it.

593
00:43:32,845 --> 00:43:37,835
We had a lot of people ringing saying, can
we go to this place, where do you suggest?

594
00:43:38,345 --> 00:43:45,075
So we sent out letters to 660
HK facilities in Victoria.

595
00:43:45,565 --> 00:43:48,605
We got very, very few responses.

596
00:43:48,845 --> 00:43:51,245
So there are not that
many dots on the map.

597
00:43:51,675 --> 00:43:55,655
But this was, um, more or less
after the legislation had become

598
00:43:55,655 --> 00:44:01,065
operative, and as I said, there was
a fair amount of stigma around it.

599
00:44:01,225 --> 00:44:04,624
I think a lot of aged care
facilities felt if they allowed

600
00:44:04,624 --> 00:44:06,735
it, they were openly condoning it.

601
00:44:07,155 --> 00:44:13,444
And we're hoping to send out another round
of letters, because we know that there

602
00:44:13,554 --> 00:44:15,559
are facilities that, um, can't afford it.

603
00:44:15,760 --> 00:44:21,320
Where voluntary assisted dying is allowed,
but the aged care facilities won't

604
00:44:21,570 --> 00:44:24,699
publicly say that that is happening there.

605
00:44:25,220 --> 00:44:29,509
So that really reinforces the importance
of having those conversations,

606
00:44:30,160 --> 00:44:35,459
because if you're looking at a
hospice or an aged care facility,

607
00:44:35,899 --> 00:44:41,629
you need to take into consideration
what services they may condone or

608
00:44:41,629 --> 00:44:43,929
support while you're in their care.

609
00:44:44,225 --> 00:44:45,475
That is so true.

610
00:44:45,545 --> 00:44:49,285
And I think we all realise now every
time we go out in the car, you know, a

611
00:44:49,285 --> 00:44:53,454
beautiful house has been knocked down
and here's another aged care facility.

612
00:44:53,614 --> 00:44:58,335
And often we see on the television or
wherever we are, these brochures with,

613
00:44:58,335 --> 00:45:02,575
you know, an elderly person sipping a
cocktail while they're playing bingo.

614
00:45:03,004 --> 00:45:08,330
But we're finding now What people
really want to know are more

615
00:45:08,720 --> 00:45:13,620
medical based needs and is voluntary
assisted dying allowed there?

616
00:45:14,250 --> 00:45:20,870
And we think that it won't be long
before that will be something that they

617
00:45:20,870 --> 00:45:22,490
will have to put on their brochures.

618
00:45:22,770 --> 00:45:26,740
It will almost be a marketing
tool because it is becoming more

619
00:45:26,740 --> 00:45:28,340
and more important to people.

620
00:45:28,700 --> 00:45:32,570
There have been cases and there is
one particular case I can think of.

621
00:45:33,365 --> 00:45:38,095
Where a man had been deemed eligible
for voluntary assisted dying.

622
00:45:38,675 --> 00:45:41,515
He went into an aged care home.

623
00:45:42,025 --> 00:45:47,505
He told them that he was eligible and that
that was something he would be doing soon.

624
00:45:48,915 --> 00:45:53,745
Before he was due to take his
medication, the aged care provider

625
00:45:53,805 --> 00:45:56,605
said no, you can't do it here.

626
00:45:57,115 --> 00:46:03,745
And this man was taken by ambulance
to a major public hospital where

627
00:46:03,745 --> 00:46:08,995
they did everything they could
to make the man comfortable.

628
00:46:09,484 --> 00:46:14,495
But the fact was that he had been
thrown out of a nursing home.

629
00:46:14,785 --> 00:46:19,725
And, you know, There, there have been
other, there have been other cases.

630
00:46:20,135 --> 00:46:25,445
So this institutional objection
is something that really, really

631
00:46:25,535 --> 00:46:27,854
needs to be more transparent.

632
00:46:28,335 --> 00:46:33,325
And I do feel that the more places that
say, yes, we will allow it, it will

633
00:46:33,335 --> 00:46:36,845
sort of almost be that peer group thing,
well, you know, if people aren't going

634
00:46:36,845 --> 00:46:40,165
to come here because of it, we're just
going to have to, you know, go with

635
00:46:40,175 --> 00:46:41,975
the, go with the pack, so to speak.

636
00:46:42,240 --> 00:46:43,980
And you mentioned the connectors,

637
00:46:46,020 --> 00:46:51,720
can they, and they're in each regional
centre or regional areas now are they?

638
00:46:52,279 --> 00:46:53,230
Sorry, the navigators.

639
00:46:53,620 --> 00:46:54,280
Navigators,

640
00:46:54,399 --> 00:46:55,570
thank you, thank you.

641
00:46:55,580 --> 00:46:59,190
Voluntary Assisted Dying
Statewide Care Navigators, yes.

642
00:46:59,600 --> 00:47:00,340
Fantastic.

643
00:47:00,389 --> 00:47:05,910
Now, whilst I'm, whilst I'm speaking
about Voluntary Assisted Dying, I

644
00:47:05,960 --> 00:47:10,780
seem to sort of focus a lot on the
problems, but we do need to remember

645
00:47:10,960 --> 00:47:12,880
there are some wonderful cases.

646
00:47:13,940 --> 00:47:18,350
And stories that we hear in which
people can only describe the

647
00:47:18,350 --> 00:47:21,270
death as beautiful, peaceful.

648
00:47:22,150 --> 00:47:29,389
There's one particular story that always
stays in my mind, and it was about a lady

649
00:47:29,429 --> 00:47:31,380
who lives in Warrnambool and her father.

650
00:47:32,330 --> 00:47:34,739
Her father lived alone.

651
00:47:35,670 --> 00:47:39,540
He grew sunflowers, and he
had a dog called Dudley.

652
00:47:40,060 --> 00:47:45,840
Dudley was actually a female greyhound,
but didn't do very well at the racetrack.

653
00:47:45,930 --> 00:47:47,529
Hence the name Dud ley.

654
00:47:48,340 --> 00:47:49,479
Oh, that's very funny.

655
00:47:50,030 --> 00:47:54,435
He Um, was diagnosed with cancer.

656
00:47:55,185 --> 00:47:59,365
Fortunately, his daughter had heard
about Voluntary Assisted Dying, and

657
00:47:59,365 --> 00:48:01,505
she came up with him to Melbourne.

658
00:48:02,125 --> 00:48:05,905
Initially, his request for Voluntary
Assisted Dying, the doctors didn't

659
00:48:05,905 --> 00:48:10,604
know much about, but she persevered,
and they went through the process,

660
00:48:11,334 --> 00:48:17,380
and He got his permit and went back to
Warrnambool with his box of medication.

661
00:48:18,120 --> 00:48:25,000
He was in a little hospital down there
and she said to him, Dad, you really need

662
00:48:25,030 --> 00:48:28,360
to write a little thank you letter to
the hospital and the staff here because

663
00:48:28,370 --> 00:48:30,099
they've just been so wonderful with you.

664
00:48:31,080 --> 00:48:33,160
And he said, no, I'm not
going to write a letter.

665
00:48:33,650 --> 00:48:36,560
And she said, I know, why don't
we give them some sunflower

666
00:48:36,670 --> 00:48:38,480
seeds from your garden?

667
00:48:38,710 --> 00:48:42,589
And they can each take or put a little
bowl on the desk and they can each take a

668
00:48:42,590 --> 00:48:45,079
handful, throw them on the garden at home.

669
00:48:45,080 --> 00:48:48,100
And every time the sunflowers
come out, they'll think of you.

670
00:48:48,530 --> 00:48:51,350
And they'll also think of
voluntary assisted dying.

671
00:48:52,500 --> 00:48:58,870
So I spoke to this beautiful woman and
she helped me after her father's death,

672
00:48:59,010 --> 00:49:01,835
which she said was, Absolutely beautiful.

673
00:49:02,865 --> 00:49:05,825
As you said, we've still got to
remember that it's someone dying.

674
00:49:07,005 --> 00:49:09,825
Even if it's a beautiful death,
they've still lost someone.

675
00:49:11,315 --> 00:49:15,465
This woman was wonderful, and she
agreed to talk to other people,

676
00:49:15,875 --> 00:49:18,285
and we actually made a little card.

677
00:49:18,335 --> 00:49:20,994
It had sunflow pictures
of sunflowers on it.

678
00:49:21,445 --> 00:49:26,625
We had the story of her father and
Dudley on the back and we actually

679
00:49:26,825 --> 00:49:34,454
sticky taped some sunflower seeds from
his garden onto the card and we sent

680
00:49:34,454 --> 00:49:37,465
it out to as many people as we could.

681
00:49:38,225 --> 00:49:42,465
And it was just such a beautiful
story and I still speak to this woman.

682
00:49:43,175 --> 00:49:52,494
And it just has so many wonderful
images and warm emotions.

683
00:49:53,320 --> 00:49:54,590
associated with it.

684
00:49:54,840 --> 00:49:57,580
But as I said, that was in the early days.

685
00:49:57,860 --> 00:50:01,830
And there are probably a lot
of other stories like that.

686
00:50:02,360 --> 00:50:07,960
But, you know, often it's the negative
stories you hear about the most.

687
00:50:08,270 --> 00:50:12,199
A lot of people who've had a wonderful
experience, you know, don't often

688
00:50:12,199 --> 00:50:13,459
want to sort of volunteer it.

689
00:50:13,549 --> 00:50:16,089
Whereas as soon as something
goes wrong, we hear about that.

690
00:50:16,489 --> 00:50:22,250
But, um, yes, I always think of Dudley
and every time I see a sunflower.

691
00:50:23,200 --> 00:50:25,980
Every time, I always think
of that beautiful story.

692
00:50:26,260 --> 00:50:27,230
Oh, that's lovely.

693
00:50:27,590 --> 00:50:28,780
Thanks for sharing, Jane.

694
00:50:29,040 --> 00:50:29,930
That's beautiful.

695
00:50:30,460 --> 00:50:35,119
So, if someone was considering
voluntary assisted dying in a regional

696
00:50:35,160 --> 00:50:39,949
area, they could come to your website
and look up to see who was in the

697
00:50:39,949 --> 00:50:42,109
area they could get support from.

698
00:50:42,405 --> 00:50:43,085
Yes, or

699
00:50:43,085 --> 00:50:47,105
even just, I mean, we would, um,
suggest it to them and we would give

700
00:50:47,105 --> 00:50:51,925
them the name of the area and give them
the phone number of their navigator.

701
00:50:52,334 --> 00:50:57,414
A lot of people ring the navigator service
when they go and see their doctor and ask

702
00:50:57,414 --> 00:51:02,425
the question, do you support voluntary
assisted dying or will you help me?

703
00:51:02,575 --> 00:51:03,605
And the doctor says, no.

704
00:51:04,075 --> 00:51:08,625
Now, I seem to be criticising
our law at every turn and corner.

705
00:51:08,685 --> 00:51:09,055
No, it's

706
00:51:09,055 --> 00:51:10,445
just the current state of play.

707
00:51:10,445 --> 00:51:16,615
But the doctors in Victoria can
conscientiously object themselves, but

708
00:51:16,615 --> 00:51:21,975
there's no legal requirement for them
to refer the person onto another doctor,

709
00:51:22,455 --> 00:51:27,855
tell them where to go, where they can find
more information on our VAD providers.

710
00:51:28,325 --> 00:51:30,605
So that's where we get
a lot of phone calls.

711
00:51:30,605 --> 00:51:33,265
Our general manager in the
office will often get a lot.

712
00:51:33,980 --> 00:51:38,600
a phone call saying, I've tried this
doctor, tried that doctor, and we

713
00:51:38,620 --> 00:51:43,249
will refer the person then to the
navigators, who have an extensive

714
00:51:43,250 --> 00:51:48,540
knowledge of doctors who are very
willing to be involved in the process.

715
00:51:48,589 --> 00:51:53,119
And it's, I really take my hat off
to some of these doctors, cause

716
00:51:53,189 --> 00:51:56,480
they're not, um, remunerated for this.

717
00:51:57,560 --> 00:52:02,340
process and a lot of them are taking
terminally ill patients that they've

718
00:52:02,350 --> 00:52:08,130
never looked after just for the
voluntary assisted dying process.

719
00:52:08,310 --> 00:52:11,780
I can understand doctors that, you
know, have looked after their patients

720
00:52:11,810 --> 00:52:16,289
for years and years and years, but
it is, it is a big thing, I think,

721
00:52:16,330 --> 00:52:21,940
to take someone on in that terminal
stage and you, You know, develop a

722
00:52:22,020 --> 00:52:27,690
very, very intimate relationship and I
think it must take its toll on doctors.

723
00:52:27,980 --> 00:52:29,320
I'm sure it does.

724
00:52:29,980 --> 00:52:32,490
And tell me, how did
you get involved, Jane?

725
00:52:32,899 --> 00:52:38,579
Well, I'd always been a big
advocate of assisted dying.

726
00:52:38,930 --> 00:52:44,149
When I was at uni doing science, I
think Peter Singer put out his book,

727
00:52:44,169 --> 00:52:51,335
Animal Liberation, And it talked about
animal euthanasia, and I remember one

728
00:52:51,335 --> 00:52:55,655
or two deaths where my grandfather
had dementia and was in a nursing

729
00:52:55,655 --> 00:52:58,075
home and just, you know, rotted away.

730
00:52:58,525 --> 00:53:02,615
And I remember thinking, you know,
why can't people have choice?

731
00:53:02,615 --> 00:53:06,775
Like, well, we use the term euthanasia
in those days, but obviously it's

732
00:53:06,775 --> 00:53:10,725
one we steer clear of nowadays
because it has, you know, so many

733
00:53:10,725 --> 00:53:12,975
connotations with World War atrocities.

734
00:53:13,465 --> 00:53:18,945
And, anyway, it was something I really
started thinking about, and then I started

735
00:53:18,945 --> 00:53:21,515
attending a lot of public lectures on it.

736
00:53:22,115 --> 00:53:27,015
When Rodney Syme joined the VAD,
the Dying with Dignity Board, he

737
00:53:27,025 --> 00:53:31,015
was involved in a lot of debates
and lectures, which I went to.

738
00:53:31,495 --> 00:53:36,145
I then went back as a mature age
student and did a Master of Bioethics,

739
00:53:36,635 --> 00:53:42,024
which I just loved, and the component
dealing with assisted dying all

740
00:53:42,024 --> 00:53:44,874
over the world was just amazing.

741
00:53:45,455 --> 00:53:51,945
I then talked to Rodney Syme and said,
what can I do to join Dying with Dignity

742
00:53:51,975 --> 00:53:53,885
Victoria, and what can I do to help?

743
00:53:54,415 --> 00:54:00,965
And we met on several occasions and
unfortunately, just as I was about to

744
00:54:00,975 --> 00:54:05,614
start doing some work, my mother was
diagnosed with motor neurone disease.

745
00:54:06,235 --> 00:54:09,635
So that obviously consumed my life.

746
00:54:10,145 --> 00:54:17,995
And then after mum died, which was in
2015, I have to say, luckily, Andrew

747
00:54:17,995 --> 00:54:23,994
Denton appeared on the scene and I
happened to see something on social media

748
00:54:23,994 --> 00:54:29,815
that he was asking for stories of bad
deaths for a book he was going to write.

749
00:54:30,270 --> 00:54:35,100
And I wrote my story and straight
away, someone rang me and said,

750
00:54:35,160 --> 00:54:36,760
this is just what we're looking for.

751
00:54:36,850 --> 00:54:42,930
And he produced the book, The Damage Done,
and they launched the book at the National

752
00:54:42,990 --> 00:54:48,970
Press Club and Canberra and a couple of my
friends came with me and from then on, I

753
00:54:48,970 --> 00:54:54,100
was just absolutely, you know, swallowed
up by the whole process, so passionate.

754
00:54:54,500 --> 00:54:57,650
I did a lot of work then for
Dying with Dignity Victoria.

755
00:54:58,105 --> 00:55:04,365
And joined the board in 2019, became
vice president last year, or the year

756
00:55:04,365 --> 00:55:06,875
before, and then president last year.

757
00:55:07,175 --> 00:55:11,024
But I think anyone who does this
work, or most people who do this

758
00:55:11,025 --> 00:55:13,355
work, do it because of someone.

759
00:55:13,925 --> 00:55:18,485
And I do it because of my mum and
my dad had an equally horrendous.

760
00:55:19,315 --> 00:55:19,595
death.

761
00:55:19,875 --> 00:55:22,915
And, you know, as I said, we all do it.

762
00:55:22,915 --> 00:55:27,215
It's voluntary, but it's
something I'm doing for them.

763
00:55:27,455 --> 00:55:30,155
Well, I'm sure they'd be very
proud of the work you're doing.

764
00:55:30,404 --> 00:55:30,974
Thank you.

765
00:55:31,555 --> 00:55:37,255
Now, Jane, we've covered off on the
history of dying with Dignity Victoria

766
00:55:37,724 --> 00:55:40,320
up until you know, really now.

767
00:55:40,830 --> 00:55:42,420
Where's the future?

768
00:55:42,960 --> 00:55:44,170
What do we expect?

769
00:55:44,760 --> 00:55:46,480
Do we need to change?

770
00:55:47,110 --> 00:55:50,639
Do you have any challenges that
currently exist with the legislation?

771
00:55:51,330 --> 00:55:54,490
Well, you have asked a very,
very good question there.

772
00:55:54,890 --> 00:56:00,449
Cause at our 50th year celebration,
that was one of the things that

773
00:56:00,499 --> 00:56:05,919
we divided the time between what
we'd achieved and where to next.

774
00:56:06,579 --> 00:56:11,875
And that, is very much, going to be
in the hands of the young ambassadors.

775
00:56:12,215 --> 00:56:15,295
And they've got some incredible ideas.

776
00:56:15,295 --> 00:56:17,885
They're coming from a
different perspective.

777
00:56:18,185 --> 00:56:21,654
They've got so, so much to offer.

778
00:56:21,695 --> 00:56:28,245
I mean, even just their involvement with
the, media and getting the message out.

779
00:56:28,715 --> 00:56:32,715
They are just going to take
this all to another level.

780
00:56:33,395 --> 00:56:39,285
In the immediate future, of
course, we need to see changes

781
00:56:39,324 --> 00:56:41,244
and amendments to our legislation.

782
00:56:41,795 --> 00:56:45,485
We haven't yet received the
results of it, but there was,

783
00:56:45,625 --> 00:56:48,465
um, it was in the legislation.

784
00:56:49,075 --> 00:56:55,675
It was mandated that a five year
review on the first four years

785
00:56:55,725 --> 00:56:59,835
of VAD operation be carried out.

786
00:57:00,264 --> 00:57:04,794
Now, as I said, it was purely
only on the operation, and there

787
00:57:04,794 --> 00:57:09,075
was no indication that there
would be any legislative change.

788
00:57:09,745 --> 00:57:16,495
And this caused us great concern, and it
seems that we are going to have to work

789
00:57:17,680 --> 00:57:23,460
work really, really hard to achieve these
changes that people so desperately want.

790
00:57:23,900 --> 00:57:26,689
And it's changes like I've
already mentioned to you,

791
00:57:26,720 --> 00:57:29,470
getting rid of that gag clause.

792
00:57:29,870 --> 00:57:36,399
Another major problem that has
proved extremely problematic is that

793
00:57:36,790 --> 00:57:43,570
of the federal ban on discussing
VAD over a carriage service.

794
00:57:43,660 --> 00:57:45,150
So this is telehealth.

795
00:57:45,620 --> 00:57:47,919
And as we saw in COVID.

796
00:57:48,320 --> 00:57:54,480
Nearly every medical field was able
to conduct discussions and have

797
00:57:54,480 --> 00:57:57,190
consultations over a carriage service.

798
00:57:57,480 --> 00:58:06,175
Now what happened in Australia was
that in, I think it was 2005, The

799
00:58:06,175 --> 00:58:12,875
Federal Criminal Code was amended,
and it was amended to say that

800
00:58:13,435 --> 00:58:20,605
inciting or counselling suicide
over a carriage service was illegal.

801
00:58:21,124 --> 00:58:24,144
Now the reason for this being,
well, there were two reasons.

802
00:58:24,164 --> 00:58:31,215
One was, as I mentioned before, The,
um, Northern Territory had their

803
00:58:31,215 --> 00:58:36,875
euthanasia program available for a
couple of months and Philip Nitschke

804
00:58:36,885 --> 00:58:41,564
did set up a website, which people
could access, which would more or

805
00:58:41,564 --> 00:58:43,775
less tell them how to end their lives.

806
00:58:44,265 --> 00:58:47,125
So that was one thing
they wanted to prevent.

807
00:58:47,395 --> 00:58:53,555
The other thing was at the time, there
was a lot of this formation of chat

808
00:58:53,555 --> 00:58:58,895
rooms, and people were very concerned
about the idea of suicide ideation.

809
00:58:59,365 --> 00:59:03,954
So all, this rule was made, this
amendment was made to the criminal code,

810
00:59:04,354 --> 00:59:09,910
and voluntary assisted dying wasn't
even on the back of anyone's mind.

811
00:59:10,370 --> 00:59:16,360
Voluntary assisted dying was then
became operative in June 2019.

812
00:59:16,669 --> 00:59:21,729
And a few weeks after it became operative,
the health department reached out to

813
00:59:21,730 --> 00:59:28,015
doctors who had done the training and
We're seeing patients and told them

814
00:59:28,055 --> 00:59:33,835
that it was illegal for them to talk on
the phone, on the internet, anything,

815
00:59:33,955 --> 00:59:37,865
any carriage service to discuss VAD.

816
00:59:38,344 --> 00:59:45,305
Now, um, there's a hefty, hefty fine
and I think they lose their license and

817
00:59:45,715 --> 00:59:50,655
probably it's a great deterrent for a
lot of doctors, especially rural doctors.

818
00:59:51,025 --> 00:59:55,405
It is a incredibly discriminatory
piece of legislation.

819
00:59:56,770 --> 01:00:01,380
People in the country, they can't
always be traveling vast distances.

820
01:00:01,600 --> 01:00:05,550
A, some people are bedridden because
of the pain, they might be hooked

821
01:00:05,550 --> 01:00:10,419
up to so much medical equipment,
and we heard of one person who

822
01:00:10,420 --> 01:00:14,269
traveled for hours lying in the boot
of a car because they couldn't sit.

823
01:00:14,669 --> 01:00:17,980
I've heard of another person whose
pressure sores were so raw to the bone.

824
01:00:18,800 --> 01:00:26,580
That they had to lie, lie down on a water
mattress, you know, just absolutely cruel.

825
01:00:26,890 --> 01:00:30,160
So we'd love, we would
love to see that changed.

826
01:00:30,630 --> 01:00:36,590
One of the doctors on our board, Nick
Kahn, actually went to the federal

827
01:00:36,640 --> 01:00:45,880
court last year and contested the reason
for why it's banned by saying that

828
01:00:45,880 --> 01:00:51,920
voluntary assisted dying is not suicide,
because that was their rationale for

829
01:00:51,990 --> 01:00:56,379
not allowing it to be discussed was
that they said it was a form of suicide.

830
01:00:56,695 --> 01:01:01,055
Now, I could probably go on for hours
and hours and hours explaining the

831
01:01:01,055 --> 01:01:06,654
differences between the two, but
unfortunately, Nick lost his case.

832
01:01:06,655 --> 01:01:13,395
He wanted a judicial interpretation of
what suicide was in relation to VAD,

833
01:01:13,425 --> 01:01:17,925
and the judge, when she handed down her
decision, said she thought it was suicide.

834
01:01:17,925 --> 01:01:21,615
So all the states have
worked together for years.

835
01:01:21,635 --> 01:01:24,324
We've written to our attorneys general.

836
01:01:24,830 --> 01:01:30,090
Federal Attorney General, Health
Ministers, and at the moment, all to

837
01:01:30,090 --> 01:01:35,499
no avail, but it's something we are
all working very, very hard to achieve.

838
01:01:35,610 --> 01:01:38,400
And is that getting that
change of definition?

839
01:01:38,699 --> 01:01:43,360
Rather than definition, it really
would just involve just one insertion

840
01:01:43,460 --> 01:01:46,054
into the criminal code of VAD.

841
01:01:46,535 --> 01:01:47,645
is not suicide.

842
01:01:48,165 --> 01:01:53,405
A lot of states, a lot of states actually
saw what happened in Victoria and

843
01:01:53,455 --> 01:01:58,635
Western Australia, and they put clauses
in their legislation saying we do not

844
01:01:58,674 --> 01:02:01,915
consider VAD, you know, to be suicide.

845
01:02:02,435 --> 01:02:08,324
But as we all know, federal legislation
does override state legislation.

846
01:02:08,914 --> 01:02:14,745
So there, as at this moment, there
has never been a charge laid against

847
01:02:14,745 --> 01:02:19,305
a doctor, but it is always in the
back of their minds when they are

848
01:02:19,305 --> 01:02:21,685
conducting such conversations.

849
01:02:21,955 --> 01:02:25,545
And it's not even necessarily,
you know, the assessment process.

850
01:02:25,574 --> 01:02:29,084
We believe, obviously, that the
doctor and the patient need to

851
01:02:29,084 --> 01:02:31,219
have at least one face to face.

852
01:02:31,460 --> 01:02:36,810
Consultation and assessment, but in a
procedure like this, there are many,

853
01:02:36,810 --> 01:02:41,280
many follow up calls, as you can imagine,
you don't sort of meet with the doctor,

854
01:02:41,280 --> 01:02:44,980
decide, yes, we'll do it, and then that's
it, you know, in the wee hours of the

855
01:02:44,980 --> 01:02:48,370
morning, you'd be thinking, you'd have a
million and one questions on your mind,

856
01:02:48,389 --> 01:02:52,770
which you'd want to ask your doctor,
and it's just not feasible to expect a

857
01:02:52,770 --> 01:02:56,780
doctor to travel miles to see a patient
or for a patient to get in the car,

858
01:02:57,405 --> 01:02:59,255
Each time they want to ask a question.

859
01:02:59,595 --> 01:03:04,335
So, as I said, it's a huge problem
and it's one that is affecting

860
01:03:04,475 --> 01:03:06,235
all jurisdictions in Australia.

861
01:03:06,524 --> 01:03:09,514
Especially given how much
we rely on technology.

862
01:03:09,715 --> 01:03:14,365
Our interview now is being done online.

863
01:03:14,655 --> 01:03:17,575
It's just part of our
everyday life nowadays.

864
01:03:17,645 --> 01:03:18,605
Absolutely.

865
01:03:18,805 --> 01:03:19,785
Absolutely.

866
01:03:20,005 --> 01:03:24,655
And I just think those, you know, poor
people, there are people Who have not

867
01:03:24,995 --> 01:03:28,915
accessed voluntary assisted dying,
have had to lie there, suffering,

868
01:03:29,345 --> 01:03:33,155
prolonged death, without adequate
pain relief, without this, without

869
01:03:33,155 --> 01:03:37,894
that, because they just have not been
able to seek the medical advice they

870
01:03:37,895 --> 01:03:38,255
want.

871
01:03:38,525 --> 01:03:43,645
And I think that brings us back
full circle to what you were saying

872
01:03:43,655 --> 01:03:50,075
when the politicians were Being
human and telling those stories.

873
01:03:50,345 --> 01:03:54,605
And I think that's something that we
need to remember is that when we're

874
01:03:54,605 --> 01:04:01,634
talking about this, we're talking about
people, mums, dads, sons, daughters,

875
01:04:01,654 --> 01:04:09,275
brothers, sisters, who are in these
life limiting illnesses and have these

876
01:04:09,785 --> 01:04:12,925
situations where they're in extreme pain.

877
01:04:13,055 --> 01:04:17,655
And it's not just, uh, you know, an
obscure person that we don't know.

878
01:04:17,905 --> 01:04:18,075
Oh,

879
01:04:18,835 --> 01:04:19,205
absolutely.

880
01:04:19,785 --> 01:04:26,705
There have been some horrific stories
and you just feel so helpless.

881
01:04:26,705 --> 01:04:31,995
I mean, it reminds me of when I was
nursing, to see these people in the most

882
01:04:31,995 --> 01:04:37,365
excruciating pain, And all you could
do was wipe their brow, like in the

883
01:04:37,365 --> 01:04:40,835
Florence Nightingale, and hold their hand.

884
01:04:41,095 --> 01:04:45,424
And why weren't they allowed
to be given extra morphine?

885
01:04:45,934 --> 01:04:50,624
Because in my day, analgesia had
to be given strictly four hourly.

886
01:04:51,085 --> 01:04:55,164
No sooner, even if the person
was in excruciating pain.

887
01:04:55,165 --> 01:04:55,765
And why?

888
01:04:56,215 --> 01:04:59,735
The doctor didn't want his
patient addicted to drugs.

889
01:05:00,115 --> 01:05:04,915
Even if they had three days
left to live, you did not want a

890
01:05:04,915 --> 01:05:08,655
dependency on analgesia created.

891
01:05:09,125 --> 01:05:14,025
I'm sure you should have seen, would have
seen quite a few scenarios in your time.

892
01:05:14,224 --> 01:05:19,880
And tell me, The one topic that
I hear mentioned in relation to

893
01:05:20,210 --> 01:05:26,150
voluntary assisted dying is dementia
and where the challenges around that.

894
01:05:26,429 --> 01:05:28,569
Well, that is, um,

895
01:05:29,095 --> 01:05:35,585
The number one topic, it is of
overwhelming concern to people,

896
01:05:35,595 --> 01:05:37,495
to our members, to our supporters.

897
01:05:37,565 --> 01:05:43,785
Every time we go out into public,
people's first question is why are

898
01:05:43,785 --> 01:05:50,485
people who are diagnosed with dementia
ineligible for voluntary assisted dying?

899
01:05:50,485 --> 01:05:55,055
Now the way our law stands,
there are two reasons why.

900
01:05:55,655 --> 01:06:00,754
One is a person must retain
decision making capacity.

901
01:06:01,210 --> 01:06:08,720
Be fully confident through the entire VAD
procedure, right up until the moment of

902
01:06:08,720 --> 01:06:14,170
the ingestion of the medical substance
or when it's administered by the doctor.

903
01:06:15,030 --> 01:06:21,029
Now, as we know with dementia, a lot of
people lose decision making capacity.

904
01:06:21,520 --> 01:06:23,120
So that is one reason.

905
01:06:23,430 --> 01:06:28,870
The other reason is all the Australian
states, in their legislation,

906
01:06:29,260 --> 01:06:32,560
have a time until death prognosis.

907
01:06:32,830 --> 01:06:39,739
Now, this means that someone must,
when they see their doctor, the doctor

908
01:06:39,739 --> 01:06:43,420
must say that the patient will die.

909
01:06:43,910 --> 01:06:49,560
within six months, or in the case of
a neurodegenerative disease like motor

910
01:06:49,560 --> 01:06:52,089
neurone disease, they're given 12 months.

911
01:06:52,590 --> 01:06:59,420
Now, it is very, very hard for a doctor
to make a prognosis, and quite often

912
01:06:59,599 --> 01:07:06,740
a doctor is fearful that he'll make a
wrong call, and what he calls six months,

913
01:07:06,740 --> 01:07:09,210
the patient may only have six weeks.

914
01:07:09,660 --> 01:07:13,050
And in some cases it's too late
to do voluntary assisted dying.

915
01:07:13,560 --> 01:07:19,970
Now, a patient with dementia is very,
very hard to make a prognosis and

916
01:07:19,970 --> 01:07:24,710
people can live between, you know,
up until seven years, even longer.

917
01:07:25,179 --> 01:07:30,440
So the idea that they must retain
competency throughout until the

918
01:07:30,450 --> 01:07:34,840
time of death and the fact that
they can't be given a less than

919
01:07:34,850 --> 01:07:37,649
six month time frame until death.

920
01:07:38,405 --> 01:07:41,335
is a huge obstacle in the dementia path.

921
01:07:42,030 --> 01:07:47,230
Now look, we realise it's going
to be a very, very long, a very

922
01:07:47,250 --> 01:07:52,230
contentious and a very, very complex
journey going down this path.

923
01:07:52,880 --> 01:07:57,850
However, we owe it to our members,
our supporters, the public.

924
01:07:57,850 --> 01:08:02,160
If this is what is concerning them,
we've got to have a look at it.

925
01:08:02,655 --> 01:08:09,665
Dementia is the second most feared
disease in Australia after cancer, and

926
01:08:09,665 --> 01:08:15,885
it's the leading cause of death for
Australians over 85 and women over 76.

927
01:08:16,375 --> 01:08:21,815
At the moment there are 450,
000 Australians living with

928
01:08:21,815 --> 01:08:27,685
dementia, and that's expected
to go over a million by 2050.

929
01:08:28,095 --> 01:08:33,320
Now, as we know, our nursing
homes We're not in a good state.

930
01:08:33,610 --> 01:08:38,040
How we are going to help these people.

931
01:08:38,505 --> 01:08:40,255
is the big unknown.

932
01:08:40,755 --> 01:08:45,505
There are a lot of people who
have witnessed a loved one die

933
01:08:46,085 --> 01:08:47,975
from the effects of dementia.

934
01:08:48,345 --> 01:08:55,075
There are a lot of people who have younger
onset dementia in their family, and

935
01:08:55,075 --> 01:08:57,934
that is incredibly frightening for them.

936
01:08:57,935 --> 01:09:01,235
I mean, we all lose our keys or do
something, but for people like that.

937
01:09:01,705 --> 01:09:02,975
We think, is this the start?

938
01:09:03,445 --> 01:09:08,825
I've looked at surveys from overseas
and there are quite a lot of people

939
01:09:08,835 --> 01:09:14,695
who have experienced cases of dementia
in their family who, upon receiving

940
01:09:14,695 --> 01:09:20,164
diagnosis, take their lives in
that initial post diagnosis period.

941
01:09:20,725 --> 01:09:24,135
And that is happening, and
that is happening in Australia.

942
01:09:24,615 --> 01:09:30,415
Rodney Syme, Described dementia
as the worst journey of all.

943
01:09:30,945 --> 01:09:34,865
And he knew he had helped so many
people to die from every type of

944
01:09:34,865 --> 01:09:37,485
cancer and every horrific disease.

945
01:09:38,125 --> 01:09:41,245
But he thought dementia was the worst.

946
01:09:41,635 --> 01:09:45,744
He wrote a book before he
died called A Completed Life.

947
01:09:46,275 --> 01:09:52,165
And we actually posthumously
published this book late last year.

948
01:09:52,645 --> 01:09:56,565
And it talks about the dementia journey.

949
01:09:57,075 --> 01:10:01,825
And whilst he was writing it, his
beloved wife was going down that path.

950
01:10:02,295 --> 01:10:05,745
He knew exactly what lay ahead for her.

951
01:10:06,285 --> 01:10:11,865
It is just horrendous disease, and
it does sort of almost fit the bill

952
01:10:11,875 --> 01:10:18,045
for voluntary assisted dying in
as much as it is terminal, it does

953
01:10:18,114 --> 01:10:21,294
become advanced, and it's incurable.

954
01:10:21,765 --> 01:10:27,545
As I said, we really want to have this
discussion, we need more and more people

955
01:10:27,745 --> 01:10:32,565
talking about it, where we can't say,
we can't give the answer, this is what

956
01:10:32,565 --> 01:10:34,475
should be done, this shouldn't be done.

957
01:10:34,780 --> 01:10:39,960
A lot of people have suggested that you
should, whilst you're competent, be able

958
01:10:39,960 --> 01:10:45,640
to say in an advanced care directive,
when I reach the stage where I can't

959
01:10:45,640 --> 01:10:50,890
recognise my children, or I can't look
after my personal hygiene, or I can't feed

960
01:10:50,890 --> 01:10:58,769
myself, whatever scenario, then I want
help, and I want voluntary assisted dying.

961
01:10:59,249 --> 01:11:03,225
As we've seen in other countries,
the Netherlands, People with

962
01:11:03,225 --> 01:11:09,525
dementia, yes, they can have an
assisted death, but it is very hard.

963
01:11:09,525 --> 01:11:13,285
I've read reports, you know, by
doctors saying it is very hard

964
01:11:13,575 --> 01:11:18,935
when you go to someone who then is
incompetent and quite often people

965
01:11:18,944 --> 01:11:21,655
with dementia can appear happy.

966
01:11:21,924 --> 01:11:24,375
It's almost a symptom of the disease.

967
01:11:24,585 --> 01:11:28,935
So the doctor might go and say, well,
look, you know, This is the day we're

968
01:11:28,935 --> 01:11:33,385
doing it, and the person might say,
Oh, but I'm having a lovely day today.

969
01:11:33,385 --> 01:11:36,055
I was in Africa this morning,
and I'm off to the Antarctic.

970
01:11:36,995 --> 01:11:40,765
tonight and I'm, you know, off
to play bowls and all that.

971
01:11:41,145 --> 01:11:45,175
And it is a very, very
hard task for a doctor.

972
01:11:45,745 --> 01:11:50,495
Um, New Zealand's made some great,
done some great work on this,

973
01:11:50,745 --> 01:11:51,765
where they've sort of gone further.

974
01:11:52,855 --> 01:11:55,955
And made allowance in an
advanced care directive.

975
01:11:56,085 --> 01:11:59,645
This is all, nothing's been done yet,
but they've just done some draft papers

976
01:12:00,075 --> 01:12:05,264
where you could then say, I definitely
want it and when the doctor comes to

977
01:12:05,265 --> 01:12:10,764
help me die, if I say, if I appear happy
and all that, I still want to go ahead.

978
01:12:11,210 --> 01:12:15,980
If I'm aggressive and, you
know, physically abusing the

979
01:12:15,980 --> 01:12:18,890
doctor, I still want to go ahead.

980
01:12:19,529 --> 01:12:21,290
So there's no easy answer to it.

981
01:12:21,480 --> 01:12:26,100
It's a very, very contentious
issue, but it is something that

982
01:12:26,430 --> 01:12:29,930
preys on so many people's minds.

983
01:12:30,430 --> 01:12:35,600
And as I said to you, I've spoken to quite
a few people whose family, where I'm young

984
01:12:35,600 --> 01:12:38,210
or on set, dementia has been prevalent.

985
01:12:38,605 --> 01:12:40,645
And it's just a hell of a life for them.

986
01:12:40,905 --> 01:12:46,225
And they say if only they knew
that when the time came, they

987
01:12:46,225 --> 01:12:47,475
could have an assisted death.

988
01:12:47,865 --> 01:12:51,265
It would make their remaining
life just so much better.

989
01:12:51,514 --> 01:12:56,654
Now Jane, two things that I want to
ask you about before we finish up is

990
01:12:56,685 --> 01:13:03,164
firstly, how does voluntary assisted
dying work in with palliative care?

991
01:13:03,165 --> 01:13:04,755
Well, that is a terrific

992
01:13:04,755 --> 01:13:05,325
question.

993
01:13:06,325 --> 01:13:12,570
In the beginning, People suggested
they were polar opposites and that

994
01:13:12,670 --> 01:13:17,340
palliative care wanted nothing to
do with voluntary assisted dying.

995
01:13:17,830 --> 01:13:21,009
We've always insisted
they are complementary.

996
01:13:21,190 --> 01:13:23,699
We believe palliative care is important.

997
01:13:24,215 --> 01:13:24,865
Amazing.

998
01:13:25,365 --> 01:13:33,564
My mum died in a palliative care facility
and the care was exemplary until she

999
01:13:33,564 --> 01:13:37,564
was dying, and then things went so rosy.

1000
01:13:37,884 --> 01:13:40,284
But palliative care has so much to offer.

1001
01:13:40,565 --> 01:13:43,965
And as I said, we see the two
processes as complementary.

1002
01:13:43,965 --> 01:13:49,025
Palliative care have said that
in a very small number of cases,

1003
01:13:49,125 --> 01:13:52,644
they are unable to treat the pain.

1004
01:13:54,480 --> 01:14:00,890
And it is this small number of people that
are given the option of assisted dying.

1005
01:14:01,390 --> 01:14:07,759
I've seen over the last couple of years
and heard reports from doctors saying,

1006
01:14:08,190 --> 01:14:15,260
um, that This sort of rift is now, um,
closing at a rapid rate, and there are

1007
01:14:15,260 --> 01:14:21,049
a lot more palliative care facilities
and palliative care in itself that are a

1008
01:14:21,049 --> 01:14:25,839
lot more accepting of voluntary assisted
dying, and they're also able to see

1009
01:14:25,879 --> 01:14:30,465
that when people get the medication,
That the quality of life is so much

1010
01:14:30,475 --> 01:14:37,055
better and that palliative care and
voluntary assisted dying can co exist.

1011
01:14:37,655 --> 01:14:42,065
And Toby, we've talked a lot about
the process about voluntary assisted

1012
01:14:42,065 --> 01:14:47,384
dying but at the end of the day
someone is still dying and there

1013
01:14:47,385 --> 01:14:49,475
is grief associated with that.

1014
01:14:50,405 --> 01:14:55,825
and perhaps more complicated grief
because they've gone through the

1015
01:14:55,825 --> 01:14:57,815
voluntary assisted dying process.

1016
01:14:57,945 --> 01:15:03,324
So I believe you've set up an
initiative with Griefline Australia

1017
01:15:03,945 --> 01:15:05,274
or Griefline I should say.

1018
01:15:05,355 --> 01:15:06,305
Griefline, yes.

1019
01:15:06,765 --> 01:15:12,485
Um, we noticed after voluntary
assisted dying became operative

1020
01:15:13,025 --> 01:15:15,025
that there was just no help.

1021
01:15:15,075 --> 01:15:20,260
In fact, I attended a witnessing one
time and there was a man Whose wife

1022
01:15:20,790 --> 01:15:25,700
was going through the process and
as I was leaving the building, their

1023
01:15:25,710 --> 01:15:30,950
home, he said, we're not telling any
of our children or grandchildren or

1024
01:15:31,050 --> 01:15:33,329
anyone about what we're going through.

1025
01:15:33,840 --> 01:15:38,000
And I thought, my God, I got home and I
thought that man will carry that burden.

1026
01:15:38,575 --> 01:15:40,485
around for the rest of his life.

1027
01:15:40,965 --> 01:15:45,835
He needs to be able to talk to someone,
even with anonymity, but just someone

1028
01:15:45,835 --> 01:15:48,905
who's been through a similar experience.

1029
01:15:49,435 --> 01:15:54,444
Anyway, we started up a one on one peer
support group and we would just put

1030
01:15:54,444 --> 01:15:59,575
people in touch with each other for a
phone just to have a chat over the phone.

1031
01:16:00,125 --> 01:16:03,525
But what we did find was that
a lot of people really wanted

1032
01:16:03,555 --> 01:16:05,565
to join a support group.

1033
01:16:06,115 --> 01:16:13,710
So last year, We, um, collaborated
with GriefLine to form this pilot

1034
01:16:13,710 --> 01:16:19,820
program looking at supporting people
who had helped a loved one through

1035
01:16:19,820 --> 01:16:24,879
the VAD process, and we've had a
couple of sessions that have run.

1036
01:16:24,880 --> 01:16:29,560
Each session is six weeks, and
there are a couple more to occur.

1037
01:16:29,710 --> 01:16:33,954
The whole topic of grief, and I'm sorry,
I am going to look at some notes here.

1038
01:16:34,325 --> 01:16:42,025
And I make no pretense that I am a grief
counsellor or anything like that, but

1039
01:16:42,345 --> 01:16:48,105
obviously we pick up a lot from people
and family members when we speak to them.

1040
01:16:48,585 --> 01:16:54,784
And as you said, the whole concept
of voluntary assisted dying lends

1041
01:16:54,784 --> 01:16:58,925
itself to a very different, what can
be a very different grief process.

1042
01:16:59,245 --> 01:17:04,475
For a start, not many people
can say Next Tuesday morning,

1043
01:17:04,685 --> 01:17:06,975
at 11am, I'm going to die.

1044
01:17:07,485 --> 01:17:11,865
And if they share that with their
family, people automatically start

1045
01:17:11,865 --> 01:17:14,155
grieving, this anticipatory grief.

1046
01:17:14,884 --> 01:17:19,844
Some people use the time they may
want to have a party to send that

1047
01:17:19,844 --> 01:17:26,125
person off with and will sort
of really keep themselves busy.

1048
01:17:26,415 --> 01:17:31,229
And then it happens and it's, oh,
I can't believe that person's gone.

1049
01:17:31,680 --> 01:17:32,780
actually died.

1050
01:17:32,830 --> 01:17:34,670
We were celebrating a dead.

1051
01:17:35,345 --> 01:17:43,055
As we know, not all people agree with
BAD, and there can be a huge amount of

1052
01:17:43,055 --> 01:17:49,155
diversity of opinion within a family
that can lead to a lot of conflict.

1053
01:17:49,655 --> 01:17:54,644
I myself think one of the most beautiful
acts of love come from people I've

1054
01:17:54,644 --> 01:18:00,325
heard who have said, I really don't
agree with Fonchia's sister dying, but

1055
01:18:00,335 --> 01:18:07,120
I love my father, my mother, so much
that I was willing to support them.

1056
01:18:07,640 --> 01:18:13,810
And I, I just, I think that's a
remarkable, um, a remarkable thing to do.

1057
01:18:14,330 --> 01:18:21,599
Um, one, a lot, some people don't
understand the reason why people are

1058
01:18:21,610 --> 01:18:23,169
seeking voluntary assistance to die.

1059
01:18:23,169 --> 01:18:29,210
Perhaps they're interstate and it may
not be until they actually see the

1060
01:18:29,210 --> 01:18:31,750
person and the amount of pain they're in.

1061
01:18:32,655 --> 01:18:38,695
that then they will be more accepting
of the assisted dying process and this

1062
01:18:38,705 --> 01:18:40,755
will then help with their grief process.

1063
01:18:41,025 --> 01:18:45,565
On the other hand, there are people
who go through the process and

1064
01:18:45,725 --> 01:18:48,234
their pain isn't that apparent.

1065
01:18:48,544 --> 01:18:51,155
It's almost an invisible pain.

1066
01:18:51,325 --> 01:18:54,635
And that is very, very hard
for some people to understand.

1067
01:18:54,655 --> 01:18:58,205
Well, you know, why do they want to
die when they look all right to me?

1068
01:18:58,635 --> 01:18:59,284
Type thing.

1069
01:18:59,824 --> 01:19:02,205
There can be a lot of resentment.

1070
01:19:02,710 --> 01:19:03,700
by loved ones.

1071
01:19:04,080 --> 01:19:10,210
In fact, the resentment can turn to
anger in as much as people can interpret.

1072
01:19:12,525 --> 01:19:17,125
What a person seeking VAD is doing
is actually choosing to leave them.

1073
01:19:17,625 --> 01:19:19,465
They're being neglected.

1074
01:19:19,935 --> 01:19:20,365
Why?

1075
01:19:20,395 --> 01:19:22,645
Why would that person want to leave us?

1076
01:19:22,645 --> 01:19:24,224
You know, why should they?

1077
01:19:24,475 --> 01:19:25,314
It's not fair.

1078
01:19:25,314 --> 01:19:26,855
We all got our problems.

1079
01:19:27,024 --> 01:19:28,804
Why do they get the chance to leave?

1080
01:19:30,015 --> 01:19:36,305
There are reports, and we've talked to
people who didn't know their loved one was

1081
01:19:36,305 --> 01:19:41,345
going through the voluntary assisted dying
process and have found out after, and that

1082
01:19:41,404 --> 01:19:43,954
obviously would be a terrible experience.

1083
01:19:43,955 --> 01:19:48,204
You'd feel as though you hadn't
been trust, you'd look back at your

1084
01:19:48,205 --> 01:19:50,294
relationship and think what went wrong.

1085
01:19:50,295 --> 01:19:55,075
These are just little examples of the
different, you know, experiences people

1086
01:19:55,085 --> 01:19:59,815
have, which all, which you said, you
know, complicate the grief process.

1087
01:20:00,135 --> 01:20:05,745
And Jane, do you think having
open conversations and talking

1088
01:20:05,745 --> 01:20:11,014
about in advanced care plans or
advanced care directives, even just

1089
01:20:11,025 --> 01:20:16,365
like you were saying, having the
conversation would alleviate some of

1090
01:20:16,404 --> 01:20:19,105
the challenges around the process?

1091
01:20:19,205 --> 01:20:21,045
Well, I think that's one of the really big

1092
01:20:21,395 --> 01:20:27,630
positives of it is that Families do
have the chance to talk about it.

1093
01:20:27,970 --> 01:20:31,540
They know that this is
what their loved one wants.

1094
01:20:31,850 --> 01:20:35,960
They have the chance, which a lot of
people are denied, to be able to sit

1095
01:20:35,970 --> 01:20:42,479
around the bed and talk, and share
stories, share that last, that last laugh.

1096
01:20:42,889 --> 01:20:48,640
A lot of people, I think, find, probably
find the grief process a lot easier.

1097
01:20:49,270 --> 01:20:53,000
when they know that this
is what that person wanted.

1098
01:20:53,540 --> 01:20:56,180
And it's like I was saying before,
you know, if you haven't written

1099
01:20:56,180 --> 01:20:59,890
an advanced care directive, you
don't know when you agree to some

1100
01:20:59,890 --> 01:21:03,710
medical procedure, would that person
have wanted it or wouldn't they?

1101
01:21:04,210 --> 01:21:10,975
And do you think that as we talk about
it more and it becomes More publicly

1102
01:21:10,985 --> 01:21:16,965
known and more talked about, and we
move away from the negative language

1103
01:21:16,965 --> 01:21:22,245
that we've had in the past, that it's no
longer will be associated or perceived

1104
01:21:22,435 --> 01:21:30,674
as something such as suicide or negative,
like euthanasia, but it is actually a,

1105
01:21:30,755 --> 01:21:34,955
a medical option and it is very much.

1106
01:21:35,400 --> 01:21:38,590
medically something that someone chooses?

1107
01:21:38,800 --> 01:21:42,840
Oh, I think without a doubt it's
just going to be a matter of time.

1108
01:21:43,160 --> 01:21:46,750
I know my dear friends are very
tolerant of me as my family because

1109
01:21:46,760 --> 01:21:50,400
they hear me talk the whole time
and I get so carried away with it.

1110
01:21:50,989 --> 01:21:53,999
And the other day I was out with
a group of friends and one of them

1111
01:21:53,999 --> 01:21:56,980
gave me a extra special big hug.

1112
01:21:57,150 --> 01:21:58,494
Well sure, what's that for?

1113
01:21:58,795 --> 01:22:03,005
And she said, for all the work you
do, she said a friend of mine accessed

1114
01:22:03,255 --> 01:22:05,295
Bontree's Sister Dine on Monday.

1115
01:22:05,305 --> 01:22:05,775
Wow.

1116
01:22:06,075 --> 01:22:09,505
And she said, I just, she said,
you know, I listened to you, what

1117
01:22:09,505 --> 01:22:13,785
you tell us all about, but she
said, I never really realised.

1118
01:22:13,994 --> 01:22:18,094
Then a couple of days later, someone
else, we knew the same thing.

1119
01:22:18,514 --> 01:22:25,564
So I'm finding it's now really coming up
a lot in my personal life, conversation

1120
01:22:25,564 --> 01:22:28,654
with friends, because people know someone.

1121
01:22:29,130 --> 01:22:34,460
And, you know, word of mouth is one of
the best ways of getting the message

1122
01:22:34,460 --> 01:22:38,080
across, but also word of mouth,
we're talking about it, we're more

1123
01:22:38,120 --> 01:22:43,260
comfortable about it, and, um, you
know, a lot of people saying, if only

1124
01:22:43,540 --> 01:22:45,850
my parents could have accessed that.

1125
01:22:46,530 --> 01:22:49,530
I think we'll get to the stage soon
where we will look back in the dim,

1126
01:22:49,570 --> 01:22:51,709
dark ages where people did suffer.

1127
01:22:52,120 --> 01:22:55,060
Unnecessarily and prolonged deaths.

1128
01:22:55,300 --> 01:23:00,480
I mean we're medicalizing life to,
well we can't even call it life, that

1129
01:23:00,750 --> 01:23:07,889
stage of pre dying and I don't, I
just think we have come so far already

1130
01:23:07,899 --> 01:23:11,029
and I don't think it'll be long
before it is very commonly believed.

1131
01:23:11,260 --> 01:23:11,780
Accepted.

1132
01:23:12,640 --> 01:23:12,860
Process.

1133
01:23:13,060 --> 01:23:19,409
Well, I have to thank you for the work
you have done because it is about end

1134
01:23:19,409 --> 01:23:21,700
of life choices at the end of the day.

1135
01:23:21,779 --> 01:23:25,849
And I think that that's the most
important thing that we would not

1136
01:23:25,850 --> 01:23:30,530
like to see any loved one go through
more pain than was necessary.

1137
01:23:30,960 --> 01:23:37,069
And that we have this as an option is
something that I take great pride in.

1138
01:23:37,340 --> 01:23:37,970
Reliefing.

1139
01:23:38,520 --> 01:23:39,000
So thank you,

1140
01:23:39,400 --> 01:23:39,430
Jane.

1141
01:23:39,430 --> 01:23:39,980
Absolute pleasure.

1142
01:23:40,250 --> 01:23:44,230
Thank you so much, Catherine, for
having me and inviting me today.

1143
01:23:46,860 --> 01:23:50,280
We hope you enjoyed today's
episode of Don't Be Caught Dead,

1144
01:23:50,589 --> 01:23:52,170
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1145
01:23:53,110 --> 01:23:57,380
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1146
01:23:57,380 --> 01:23:59,230
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1147
01:23:59,480 --> 01:24:01,800
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1148
01:24:01,875 --> 01:24:04,815
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1149
01:24:04,965 --> 01:24:09,125
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1150
01:24:09,125 --> 01:24:10,865
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1151
01:24:11,165 --> 01:24:12,515
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1152
01:24:12,665 --> 01:24:13,655
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1153
01:24:13,655 --> 01:24:17,555
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1154
01:24:17,555 --> 01:24:23,775
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