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About this episode
In this episode of "Don't Be Caught Dead", I sit down with Jane Morris, President of Dying with Dignity Victoria, to unpack the complex journey of voluntary assisted dying legislation in Australia. From its controversial beginnings to its current stringent implementation, we delve into the challenges, triumphs, and ongoing struggles in the fight for end-of-life choices.
Jane takes us on a captivating historical journey, starting with the formation of the Voluntary Euthanasia Society of Victoria in 1974. We explore pivotal moments like the groundbreaking Rights of the Terminally Ill Act in the Northern Territory in 1995, and the tireless advocacy of Dr Rodney Syme. The conversation paints a vivid picture of the societal and political battles fought over decades, culminating in Victoria's landmark legislation in 2017.
But the story doesn't end there. Jane provides an eye-opening look at the current state of voluntary assisted dying in Victoria, detailing the stringent eligibility criteria and complex process individuals must navigate. We discuss the controversial 'gag clause' that prevents doctors from initiating conversations about VAD, and the logistical challenges faced by rural residents. This episode offers a comprehensive overview of where we stand and the work that still needs to be done to ensure dignified end-of-life choices for all Australians.
Remember; You may not be ready to die, but at least you can be prepared.
Take care,
Catherine
Show notes
Guest Bio
June 19, 2024 – DWDV celebrated it’s 50th anniversary and 5 years of VAD operation in Victoria, at an event at Parliament House. Health Minister Mary-Anne Thomas and
Andrew Denton were guest speakers.
The 2024 Dying with Dignity Board
This is a photo of Nia Sims and me. Nia was the most amazing VAD advocate. We became great friends and sat together during the entire 2017 parliamentary debate.
Nia suffered from Scleroderma, an auto-immune disease and fortunately was able to access VAD years later, in Victoria.
Dr Stefanie Green, a ‘Medical Assistance In Dying’ provider. She began her career as an obstetrician and changed to assisting people to die when the law was passed in Canada.
Dr Rodney Syme
Summary
Key points from our discussion:
- The history of Dying with Dignity Victoria, dating back to 1974
- The Northern Territory's pioneering but short-lived euthanasia legislation in 1995
- Dr Rodney Syme's significant contributions to the cause
- Victoria's current VAD legislation: eligibility criteria and process
- The 'gag clause' and its impact on patient awareness
- Challenges faced by rural residents in accessing VAD
- The role of Dying with Dignity Victoria in providing witnessing services
- The VAD process; Two verbal requests, Assessments by two doctors, written request, witnessed by 2 independent witnesses and then a permit is issued
Transcript
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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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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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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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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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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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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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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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And that was in 2017?
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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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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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is that they had so much to learn from us.
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They were able to see what happened
in our parliament, see the safeguards
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or amendments we'd had to agree to.
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And as it happened, we saw this
then rapid succession of passage
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of legislation in the other states.
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But each state progressively down the
track had the opportunity to look at and
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assess how the debate had gone and how
the implementation phase went and then how
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the actual law was operated, which was.
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Fantastic.
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And so what changes have
you seen during that time?
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Changes with each state,
you mean, in legislation?
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Changes
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within Victoria and society
from 2017 to nowadays.
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Well, I think we'd like to
have seen a lot more changes.
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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.
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We would have thought That's
the word would have got around.
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You know, we do a lot
of public presentations.
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There's been a lot of media
articles, radio, so forth.
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And it's quite extraordinary to
think there are still a lot of, a
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lot of people who are unaware of it.
205
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There's.
206
00:15:33,400 --> 00:15:37,860
In, um, obviously some groups and
things who've done a lot of advocacy
207
00:15:37,860 --> 00:15:41,790
work and they have been talking
about voluntary assisted dying.
208
00:15:42,260 --> 00:15:49,800
We've seen changes in as much as we are
members and supporters, the gratitude
209
00:15:49,849 --> 00:15:55,809
they've expressed to us that this is
an option, but at the same time there
210
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is a lot of discontent and frustration.
211
00:16:00,050 --> 00:16:07,790
that our laws are so, um, the
eligibility criteria are so stringent.
212
00:16:08,050 --> 00:16:12,699
In fact, when the legislation was
passed, our legislation was referred
213
00:16:12,699 --> 00:16:15,749
to as the most stringent in the world.
214
00:16:16,150 --> 00:16:22,834
And can you talk me through What that
looks like, like what is the process,
215
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.
217
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
220
00:16:35,425 --> 00:16:38,354
summarize it as simply as I can.
221
00:16:39,000 --> 00:16:45,260
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
brought to you by Critical Info.
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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Our guide, ‘My Loved One Has Died, What Do I Do Now?’ provides practical steps for the hours and days after a loved one's death. Download it here.
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