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Camilla: Matters of life and death
is really a phrase which captures

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where we're at in our society about
thinking of not just about matters

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of life, but matters of death.

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So if we, if we think about death as
being one of the last taboo topics,

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we want to break through that.

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00:00:1 ... Read More

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Camilla: Matters of life and death
is really a phrase which captures

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where we're at in our society about
thinking of not just about matters

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of life, but matters of death.

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So if we, if we think about death as
being one of the last taboo topics,

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we want to break through that.

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You know, we now talk about mental
health, we now talk about sex.

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We should be talking about death
on an ongoing basis, particularly

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post COVID where people's mortality
was very much front of mind.

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So let's, let's take that
conversation forward as a society

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and say, we'll all die one day.

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Let's make it, if we can, a really
great quality end of life experience.

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But, but more importantly,
let's live until we die.

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Let's not go, I'm going to die in a year
or two years of this particular diagnosis,

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and I'm only going to focus on the end.

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Let's make sure that we do our
planning and think about what

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we can do about quality of life.

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What's on our bucket list?

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Who do we want to see?

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Who do we want to connect with?

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Because matters of life and death
is really about saying to people,

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think ahead, start to plan, think
about who you want to have around

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you, think about your relationships.

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Because I can tell you, if you talk to
anyone who's ever worked in palliative

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care, they will always say to you that
as people are preparing to die, they

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always say the most important thing
to them is about the quality of their

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relationships with the people they love.

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Catherine: Welcome to Don't Be
Caught Dead, a podcast encouraging

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open conversations about dying
and the death of a loved one.

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I'm your host, Catherine Ashton,
founder of Critical Info.

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And I'm helping to bring your
stories of death back to life.

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Because while you may not be ready
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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Camilla Rowland is Chief Executive
Officer of Palliative Care Australia.

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For over 30 years, she has worked in the
Australian health and community service

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delivery and advocacy sectors in CEO,
executive, clinical and education roles.

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Camilla has worked with agencies in
national, state and local government.

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rural and metropolitan areas.

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She is passionate about quality of
life issues and building community

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and sector capacity through a
collaborative approach with partner

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organisations and governments.

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In 2023, Camilla was appointed as Adjunct
Fellow at University of New South Wales.

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Her background fields are in palliative
care, age care, disability services,

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drug and alcohol, child, youth, and
family services, and mental health.

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She also has significant experience in
industry workforce development and has

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managed registered training organizations.

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Camilla has been engaged on community
sector and health sector boards and

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committee roles in rural, urban, regional,
state and national organisations.

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This work has been with advocacy and
sector capacity building organisations

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such as Playgroup Australia,
Alzheimer's Australia, ACT, the National

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Complex Needs Alliance, Council of
Social Services and Families ACT.

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Her board experience is supported
by her qualifications as a

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graduate of the Australian
Institute of Company of Directors.

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Camilla completed the Executive Masters
of Business Administration in 2019

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and was nominated for a Dean's Award.

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Her other qualifications are in
social work, adult education, human

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resources, and executive leadership.

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Thank you for joining us, Camilla.

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Camilla: Thank you.

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It sounds like I need to get a life.

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Thanks, Catherine.

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Really a pleasure to be part of it.

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Catherine: No problems.

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Now, the vision for Palliative Care
Australia is, as stated on your website,

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quality palliative care for all.

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What is palliative care?

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Camilla: That, that is a really
interesting question to many people in

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society because people don't often want
to talk about it until they need it.

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So palliative care, in layman's
terms, is really end of life care.

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It's that care that people It
takes place, it's an international

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model of subacute care and it takes
place from the time of diagnosis

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through to death and beyond death.

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So it's a mixture, it's a medical
specialty and it's a mixture of pain

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relief, symptom control, working with
people to meet their social and emotional

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needs and their spiritual needs.

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So it's very holistic as
a subacute care model.

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Operates in most Western countries
in the world and some, some

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developing countries as well.

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Uh, Australia and the Southern
Hemisphere would be seen as one

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of the leaders in palliative care.

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And so it's a medical specialty that
nurses, doctors, uh, social workers,

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allied health, uh, all work in and
plus volunteers are very important

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part of palliative care as well.

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So really palliative care comes in and
out of someone's journey as it's needed.

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So that is.

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the discipline of palliative care.

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How it's funded and delivered
is a different question that

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I know we'll talk about.

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Catherine: Fantastic.

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And at what point do people
access palliative care services?

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Camilla: So The model, the clinical model
of palliative care says internationally

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that palliative care should start at
the time of diagnosis, when it's known

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that the person's going to have a
poor prognosis, or in the words that

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you were saying to me earlier, know
that the condition will be terminal.

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The reason for that is you're introducing
a group of people into someone's

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life, a team of people that will be
there to support the person through

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various touch points in that journey.

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It doesn't mean that once you have
palliative care, that you, it's

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there every day, you know, for the
rest of your journey, which could

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be months or years for some people.

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It just means it comes
in and out as required.

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And it's better to introduce
that earlier on than say in the

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last few weeks or month of life.

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However, in Australia, currently,
we have a bit of a postcode lottery.

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And that is that you can access palliative
care, specialist palliative care in some

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areas and not other areas of Australia.

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So it's very funding dependent.

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Palliative care in Australia is
co funded by the Commonwealth

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Government and the state governments.

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And so it will depend on how much
is invested into each of those local

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health districts across all the
different states and territories.

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The issue is that we know
there isn't enough investment.

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We know that only 60 percent of people
who have life limiting illnesses in

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Australia access palliative care.

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And that, that's a concern because you
want to ensure that everybody can access

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end of life support, that nobody goes
without having that support, particularly

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for pain management and symptom control.

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I often use the analogy is that you don't
expect people to enter this world without

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care and support when you're giving birth.

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You shouldn't be expected to leave this
world without that care and support.

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Having said all that, you have sort
of two different groups of people

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that can deliver your palliative care.

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One is your specialist palliative
care services, and they're

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often connected into government.

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Hospitals, and not for profit
hospitals, and that can be delivered

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either in hospices, which are sort of
like stand alone bricks and mortar,

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a place that's a combination of your
home and a hospital environment, or

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you can go to palliative care beds
in hospitals, or you can die at home.

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And I have to say, research shows the
majority of people want to die at home.

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That's not always practical for people,
because to die at home requires that you

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have a network of family or friends or
people who are close to you around to

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support you, particularly in that last
month of life where it's very intensive

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in terms of the care that you might need.

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So then that's specialist palliative care.

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And specialist palliative care
generally gets involved where

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people have complexity and that they
need quite a significant amount of

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symptom control and pain management.

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Then you've got other health specialties
that deliver palliative care, like

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oncology, oncologists, um, um, dot GPs.

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GPs are absolutely integral in care
of people who have, like, diagnosed

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with life limiting illnesses.

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And then you have lots of other
health specialties as well

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that might become involved.

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So they, in this essence, are
delivering part of that palliative

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care approach in that journey.

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Community nurses, a huge part of that.

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Death dwellers, can
also be a part of that.

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Uh, so we need, really need to
remember that it's not just specialist

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palliative care, it's also these
other health sectors that are engaged

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in providing that end of life care.

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Catherine: So it sounds like
it's, it's quite a web and network

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that's actually involved in
this, this palliative care model.

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Camilla: Yeah, it's actually
become more of a network and

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I would also add in aged care.

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So the aged care reforms have
resulted in three major changes for

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the aged care sector going forward.

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The Aged Care Act has palliative care
embedded in it, so anyone who delivers

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aged care, either in home or in an
aged care facility, or what some people

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call a nursing home, they'll have be
required to deliver palliative care.

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components of end of life care.

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In the aged care standards palliative
care is now embedded and in the aged care

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funding instrument through My Aged Care,
palliative care is also embedded in there.

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I think the challenge will be the
implementation and is there sufficient

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funding to ensure that everybody
who has a life limiting illness gets

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the level of support they need both
in home and also clinical support.

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So in home care and clinical
support together is what will

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enable people to die at home or die
in other places of their choice.

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Catherine: And that's the current state
of play that we're even having challenges

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or you're from what I'm understanding
you're saying is that we have challenges

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with funding, what our requirements
are, and yet we know that the figures

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are forecasting an ageing population,
and You know, I believe it's double,

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Camilla: is it, is it not?

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Oh, absolutely.

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We're expecting, so CAPMG did a
report in 2020, which projected

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that the figures of people requiring
palliative care would double by 2050.

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And in fact, we know since then,
particularly with the advent of

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COVID, That it wasn't people dying
of COVID, it was people who didn't

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get diagnosed and treated with
other life limiting illnesses.

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That in fact, the increase in the numbers
of people with life limiting illness

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dying has increased far more dramatically
than we thought it would since COVID.

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And so we are probably going to
see those figures by 2035, 2040.

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So we're not, not far away,
we're talking 10 to 15 years.

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And so we can't even meet the need now.

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What's that going to look like?

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by 2035.

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And it's interesting because well known
commentators on health and economic needs.

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People like Bernard Salt have even,
and who writes for the Australian

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and Financial Review, have even
said recently, we have this tsunami

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of ageing coming upon us now.

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We're not even prepared
for that as a nation.

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We haven't planned ahead.

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We knew this was coming.

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We haven't planned ahead sufficiently
yet, uh, for all the baby boomers.

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Coming through, which is obviously a
very large section of our population.

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And we know that internationally as well.

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There's an international conference
in May in Singapore, which is going to

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address the aging crisis we have globally.

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And Australia is a very big part of that.

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And really, we need to go, how we, we need
to think about how we actually going to

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plan for this future, not just deal, not
have governments, just deal with the now,

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because we can't even meet the need now.

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So how are we going to deal with this
in the next 10 years to plan for this

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huge increase in the number of people
aging so that they're supported to be in

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community rather than continually being
diverted across into hospitals, which

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is not only economically not viable, but
it's socially not a great outcome either.

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People want to be in their communities
and they want to be at home in the main.

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Catherine: And obviously, there's
also that rise of awareness in

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elder abuse as well, uh, that we've
seen certainly being reported more

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regularly in newspapers of late.

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And what impact does those
sort of figures have on, on

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those incidents of elder abuse?

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Is that likely to increase?

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Do you think?

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Camilla: So the factors that go into
elder abuse are not necessarily connected

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00:13:14,380 --> 00:13:20,069
with palliative care directly, but we
know that if carers don't get sufficient

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support, carer health is at risk of
breaking down, mental health, physical

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health, and that is when The pressure
goes on the extended family as well and

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how far people can cope and not cope is
very contingent on how the person they're

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caring for is going as well and how
much time is required to care for them.

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So let's be really honest and say, you
know, really often in the last week

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to two weeks of life, people need,
I mean the main significant amounts

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of time of care, 24 hour Care often.

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And so if you're going to tackle
that as a family and care for

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someone at home, you also need other
services to come in and support that.

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Other community, might not just be in home
care like personal care and housework.

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It might be community transport.

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It might be people taking
you to appointments, which

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could be community transport.

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It might be people providing that social
outlet for you for quality of life.

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You know, coming to talk with
you, sit with you, you know.

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engage you in things of enjoyment.

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So that's the patient, but also the carer.

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So we really need to be thinking
ahead about what does this respite

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need that's going to emerge as well.

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So there's a whole range of service
types that are going to be impacted

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for this tsunami of older people.

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And obviously by the time I'm old,
I want to ensure as well that those

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services exist and they're embedded
in our DNA and in the, in society.

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I feel like I might have gone
off track from your question.

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00:14:49,784 --> 00:14:50,454
Catherine: No, no, no, that's,

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Camilla: that's.

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So really it's impacts on the caring that
put elder abuse at risk of increasing.

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Catherine: And just going back to
some of the things I'd like to ask,

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00:15:02,280 --> 00:15:06,579
there's a few scenarios that have been
presented to me in the last few weeks

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00:15:06,580 --> 00:15:08,350
and months that I'd like your opinion on.

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One was that a woman, uh, that I
had worked with previously, she has

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00:15:13,880 --> 00:15:17,480
been diagnosed with bowel cancer,
and it's terminal bowel cancer.

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Uh, and when I spoke to her, she had
received the diagnosis, but she was

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still feeling very much, you know,
like she was physically fit, uh, she

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just finished up work, uh, and she
wasn't sort of what she traditionally

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thought would be palliative care.

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00:15:35,009 --> 00:15:39,530
What sort of services are there
for someone like her, who is

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00:15:39,530 --> 00:15:41,530
sort of in that in between stage?

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00:15:42,869 --> 00:15:43,704
Camilla: Yeah, that's,
that's a good question.

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That's a extremely variable response
that I'll provide because it will

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00:15:48,384 --> 00:15:51,444
depend on where she's living as
to what's available in her area.

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So the first thing is about her diagnosis,
and given that it's, uh, she's been

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told it's terminal, the best thing that
we would say is actually reach out and

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talk to somebody now in a palliative
care service about What might be

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available down the track in her area?

264
00:16:07,635 --> 00:16:12,175
Because it's good to start reaching out
while you're feeling well enough to start

265
00:16:12,175 --> 00:16:14,315
reaching out and making those connections.

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00:16:14,895 --> 00:16:18,954
Starting to think about what in
home care is available in her area

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00:16:19,304 --> 00:16:24,595
that as she starts to deteriorate or
decline, what sort of cancer nursing?

268
00:16:24,685 --> 00:16:28,525
Is there available in her
home, in her home area, what's

269
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available at a local hospital?

270
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What's a avail?

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00:16:30,985 --> 00:16:34,285
Is there a hospice close by when
she may need that towards the end?

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'cause most people now are
only going to hospices for the

273
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last couple of weeks of life.

274
00:16:38,965 --> 00:16:43,405
Um, and really the principles would say
you should be able to go in and out of

275
00:16:43,405 --> 00:16:45,475
hospices as required, including respite.

276
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If you need respite from your
carer or your carer needs respite.

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So.

278
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It's starting to plan now.

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It's that advanced care planning.

280
00:16:53,060 --> 00:16:56,260
We're great advocates for advanced
care planning, starting to think ahead.

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00:16:56,590 --> 00:17:00,850
And she might have months, years,
she might have weeks, but it doesn't

282
00:17:00,850 --> 00:17:02,279
even matter if it's years ahead.

283
00:17:02,290 --> 00:17:05,490
She should start thinking about
what has she got in her area.

284
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What is, what is the available resources
within her family and her extended

285
00:17:09,870 --> 00:17:13,520
family to support and her friendship
network to support her as well.

286
00:17:13,990 --> 00:17:17,720
So it's thinking about all those aspects
of your life where you may need support.

287
00:17:18,089 --> 00:17:18,599
And.

288
00:17:19,020 --> 00:17:22,930
Thinking about it ahead of time is going
to be really helpful for you for when

289
00:17:22,930 --> 00:17:27,340
you'll get to that point where you start
to feel unwell and you don't want to

290
00:17:27,350 --> 00:17:31,339
have to deal with a whole bunch of new
people and new services at that point.

291
00:17:31,800 --> 00:17:33,350
You've already done that planning ahead.

292
00:17:34,180 --> 00:17:39,560
You, I would have hoped that either
her GP or her oncologist would have

293
00:17:39,560 --> 00:17:43,460
said to her, it would be great for you
to start planning ahead and thinking

294
00:17:43,460 --> 00:17:47,010
about what your advanced care plan
will be, starting to connect into

295
00:17:47,010 --> 00:17:51,450
those services and perhaps I can even
refer you to which is the service in

296
00:17:51,450 --> 00:17:52,690
your area that you can connect with.

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00:17:54,145 --> 00:17:57,675
Catherine: And just a point that you,
I, you mentioned then, Camilla, was,

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00:17:58,055 --> 00:18:07,525
um, respite for carers as well, so using
hospice as a service that the, the,

299
00:18:07,774 --> 00:18:12,374
the, the client or the, the patient or
the person with the, the life limiting

300
00:18:12,405 --> 00:18:15,075
illness can, can go into a hospice.

301
00:18:15,545 --> 00:18:17,745
And is that for the purpose not?

302
00:18:17,825 --> 00:18:21,815
because they might be unwell, but
well, I'm assuming they would be

303
00:18:21,815 --> 00:18:25,325
unwell, but just to give the carer
a break, is that also an option?

304
00:18:25,975 --> 00:18:28,734
Camilla: Some hospices do
provide respite and some don't.

305
00:18:28,745 --> 00:18:33,644
So she'd need to find out in her
area what her local hospice does,

306
00:18:34,004 --> 00:18:37,885
but there's also in home respite
that can be provided as well through.

307
00:18:38,135 --> 00:18:42,195
So if you're over 65 through My
Aged Care, you'd be eligible.

308
00:18:42,435 --> 00:18:46,564
For respite, if you're under 65,
so we've got a bit of a gap at the

309
00:18:46,564 --> 00:18:51,155
moment, if you're under 65 and you
don't have a functional disability,

310
00:18:51,654 --> 00:18:54,304
you may not be eligible for the NDIS.

311
00:18:55,025 --> 00:18:59,965
And each state and territory has
different levels of funds allocated

312
00:19:00,024 --> 00:19:05,030
into, um, They're into their CHSP
funding, which is about the in home

313
00:19:05,030 --> 00:19:09,870
care funding for people who really
need help at home who have illnesses.

314
00:19:10,210 --> 00:19:13,750
That may or may not be available in the
state in which she lives, depending on

315
00:19:13,750 --> 00:19:15,950
how much they have funding available.

316
00:19:16,220 --> 00:19:19,599
So it's actually state governments
who are responsible for that in home

317
00:19:19,599 --> 00:19:23,264
care support if you're under 65.

318
00:19:24,935 --> 00:19:30,585
Catherine: And so given the fact that
there might be variances in services

319
00:19:30,875 --> 00:19:35,664
available within your region, you
mentioned the postcard postcode

320
00:19:36,094 --> 00:19:42,714
lottery previously, do you suggest
that it's wise to perhaps try and

321
00:19:42,715 --> 00:19:47,810
ensure you have a strong support
network of friends and family who

322
00:19:47,840 --> 00:19:50,740
can support you if you are diagnosed?

323
00:19:50,770 --> 00:19:52,660
Camilla: Yeah, absolutely.

324
00:19:52,680 --> 00:19:56,879
It's very difficult if you're a person
completely alone with no network.

325
00:19:57,280 --> 00:20:01,379
It's very difficult and sometimes
that requires people to move to where

326
00:20:01,380 --> 00:20:03,340
their family or their friends are.

327
00:20:03,950 --> 00:20:09,930
I had a scenario last year where
a good friend of mine was flying

328
00:20:09,940 --> 00:20:11,460
from where she lived into Adelaide.

329
00:20:12,635 --> 00:20:17,165
every month to provide respite for
another friend who was caring for

330
00:20:17,165 --> 00:20:19,255
a single fellow with no family.

331
00:20:19,754 --> 00:20:24,475
He had no family, no close friends in
Adelaide, and he was dying of cancer.

332
00:20:24,955 --> 00:20:28,705
And for those last six months of his
life, he needed quite a lot of support.

333
00:20:28,915 --> 00:20:30,335
He had pancreatic cancer.

334
00:20:30,865 --> 00:20:32,345
And so she would fly in every month.

335
00:20:32,590 --> 00:20:35,040
for a number of days to provide
her friend with respite.

336
00:20:35,590 --> 00:20:41,450
And so the fellow who died, it was really,
really difficult because they couldn't

337
00:20:41,450 --> 00:20:45,410
get the level of support that he needed
from the health services in Adelaide.

338
00:20:45,889 --> 00:20:49,690
And, and so it was left to friends
to try and care for him as for

339
00:20:49,690 --> 00:20:51,350
as long as possible in home.

340
00:20:52,030 --> 00:20:56,205
I think in the end, he actually went into
hospital for the last week or two of life.

341
00:20:56,625 --> 00:21:00,035
But, you know, it was just wonderful that
my friend was able to keep flying into

342
00:21:00,045 --> 00:21:03,135
Adelaide every month and could afford to
do that to give her other friend respite.

343
00:21:03,745 --> 00:21:09,455
So we hear of many cases, many cases,
all the time anecdotally, where

344
00:21:09,455 --> 00:21:14,705
people are missing out on the level
of care that they need in home.

345
00:21:15,065 --> 00:21:19,085
Both normal in home care, when I say
normal, I mean personal care, you

346
00:21:19,085 --> 00:21:23,505
know, housework, all that sort of, you
know, support in addition to specialist

347
00:21:23,535 --> 00:21:29,264
palliative care services because
there's just not sufficient resources.

348
00:21:30,164 --> 00:21:32,784
Catherine: And do we really
know the actual figures?

349
00:21:32,784 --> 00:21:37,819
Do we have the data on, because I know
there was another case where I spoke to

350
00:21:37,819 --> 00:21:44,309
a woman earlier this week who is caring
for her father, uh, who is in a regional

351
00:21:44,309 --> 00:21:49,620
area in Victoria, and that's seven hours
away from where she, she normally resides.

352
00:21:49,959 --> 00:21:56,129
Uh, and so do we really know how many
people are actually in this scenario of

353
00:21:56,509 --> 00:21:59,989
leaving their normal place of residence,
going and caring for a loved one?

354
00:22:00,559 --> 00:22:04,120
You know, the fact that someone
was actually paying for airfares

355
00:22:04,149 --> 00:22:06,249
to fly to give someone else relief.

356
00:22:06,930 --> 00:22:09,320
Do we really know what the
actual cost of this is?

357
00:22:10,850 --> 00:22:11,520
Camilla: No, we don't.

358
00:22:11,520 --> 00:22:12,950
And that's not data we've collected.

359
00:22:13,030 --> 00:22:17,690
We, we believe we should be looking at,
so we know the data of how many people

360
00:22:17,690 --> 00:22:19,489
die each year of life limiting illnesses.

361
00:22:19,970 --> 00:22:24,220
And we then know how many are
receiving palliative care, accessing

362
00:22:24,220 --> 00:22:25,460
specialist palliative care.

363
00:22:25,850 --> 00:22:27,900
So we know that only 60%.

364
00:22:28,735 --> 00:22:30,325
are receiving palliative care.

365
00:22:30,785 --> 00:22:32,445
So where are the others going?

366
00:22:32,445 --> 00:22:35,395
We suspect that they're ending up
in hospital and perhaps in aged care

367
00:22:35,395 --> 00:22:40,505
facilities, noting that not all aged
care facilities provide palliative care.

368
00:22:40,505 --> 00:22:42,855
In fact, it's a very small
percentage in Australia.

369
00:22:43,284 --> 00:22:45,954
Um, it's growing, but it's a small
percentage in Australia that have

370
00:22:46,025 --> 00:22:48,015
palliative care embedded in their systems.

371
00:22:48,395 --> 00:22:52,525
So we, we, we know the number of people
who are potentially missing out on

372
00:22:52,525 --> 00:22:56,505
palliative care right now, but we don't
know how many carers are traveling.

373
00:22:57,035 --> 00:22:57,605
And.

374
00:22:57,855 --> 00:23:02,645
what the cost is, but we know in rural
and remote areas that the situation is

375
00:23:02,685 --> 00:23:04,565
much more extreme than in the cities.

376
00:23:04,935 --> 00:23:08,015
There's still postcard lottery issues
in the cities too, by the way, the

377
00:23:08,195 --> 00:23:15,085
capital cities, but, uh, in rural
areas, often it's just the GP and

378
00:23:15,145 --> 00:23:19,595
community nurses, and there may be an
outreach palliative care service in

379
00:23:19,735 --> 00:23:24,804
more populated rural regions, but often
people are having to travel for their

380
00:23:24,804 --> 00:23:27,995
care, or it's left to local community.

381
00:23:28,690 --> 00:23:29,900
You know, to look after people.

382
00:23:29,900 --> 00:23:35,080
So the, the responsibility of
family is pretty significant.

383
00:23:35,980 --> 00:23:39,070
And I guess that leads the question
is, how much is the responsibility

384
00:23:39,070 --> 00:23:42,520
of family and how much is
responsibility of the health system?

385
00:23:43,110 --> 00:23:47,179
And I don't have the answer to that,
but I know that we're a nation where

386
00:23:47,180 --> 00:23:51,660
social justice is really important and
everybody should be able to access that.

387
00:23:52,045 --> 00:23:54,515
the level of care that
they need at end of life.

388
00:23:54,975 --> 00:23:58,435
So I don't think there's any question
that that principle is really important.

389
00:23:58,855 --> 00:24:00,525
We don't expect people to die alone.

390
00:24:00,735 --> 00:24:02,545
We don't expect people to die in pain.

391
00:24:02,785 --> 00:24:05,214
We don't expect people to
die with unmanaged symptoms.

392
00:24:05,255 --> 00:24:06,325
And yet we know that's happening.

393
00:24:08,184 --> 00:24:12,435
Catherine: Given the challenges that
you've outlined, what are the sort of

394
00:24:12,435 --> 00:24:17,675
questions that that people should ask
to find that if they are diagnosed with

395
00:24:17,675 --> 00:24:22,800
a terminal illness, to find the care
facility for them and their family,

396
00:24:22,810 --> 00:24:25,600
or even if they are by, by themselves.

397
00:24:25,780 --> 00:24:27,629
What sort of questions
should they be asking?

398
00:24:30,050 --> 00:24:32,710
Camilla: I think it's, I think
it's a combination of two things.

399
00:24:32,739 --> 00:24:35,529
They're trying to find out what's
located in the area, but they also

400
00:24:35,529 --> 00:24:37,120
need to advocate for themselves.

401
00:24:37,529 --> 00:24:41,690
So at Palliative Care Australia, we're
constantly advocating for the investment

402
00:24:41,690 --> 00:24:46,879
that's needed to bring us up to standard
in Australia of, of, access to quality

403
00:24:46,879 --> 00:24:49,159
care for all people that need it.

404
00:24:49,580 --> 00:24:54,099
So, I would say that the more people
can advocate for what they need, if

405
00:24:54,100 --> 00:24:58,159
it's not available, advocate to their
local federal members, their local

406
00:24:58,169 --> 00:25:02,610
state members, then we'll get push from
the community to get more investment.

407
00:25:02,620 --> 00:25:05,949
Because death and dying is
still a really taboo subject.

408
00:25:06,445 --> 00:25:08,805
And for many people, they don't
want to think about it and talk

409
00:25:08,815 --> 00:25:10,225
about it till it affects them.

410
00:25:10,665 --> 00:25:17,215
It's very difficult to get broad community
advocacy happening for change to have more

411
00:25:17,225 --> 00:25:19,264
investment in quality palliative care.

412
00:25:19,955 --> 00:25:24,244
So I make that point because when
people are searching for what exists

413
00:25:24,244 --> 00:25:28,065
in their area, if they find that there
isn't a palliative care service in

414
00:25:28,065 --> 00:25:30,405
the area, then they need to advocate.

415
00:25:31,060 --> 00:25:34,980
because there should be some level
of palliative care that's available

416
00:25:34,990 --> 00:25:39,250
where they live in their rural areas
or in their cities or their towns.

417
00:25:39,810 --> 00:25:46,780
So, you know, even if that's an outreach
palliative care nurse or a visiting doctor

418
00:25:47,079 --> 00:25:49,279
that comes out, it may not be sufficient.

419
00:25:50,489 --> 00:25:51,540
Tell them to have a look.

420
00:25:51,540 --> 00:25:54,760
We have a national palliative
care directory on our website.

421
00:25:55,139 --> 00:25:58,955
The states and territories Uh,
bodies, so palliative care New South

422
00:25:58,955 --> 00:26:01,445
Wales, palliative care Victoria
and all the ones around Australia.

423
00:26:01,764 --> 00:26:06,034
Also, uh, good to find out information
about what exists in their area

424
00:26:06,624 --> 00:26:08,364
and trying to tap into that.

425
00:26:08,465 --> 00:26:09,844
So what exists in your area?

426
00:26:10,274 --> 00:26:14,614
If it doesn't exist, then advocate
because there's not enough advocate

427
00:26:14,684 --> 00:26:18,084
advocacy going on from people
in the community at this point.

428
00:26:19,435 --> 00:26:25,095
Catherine: And given the fact that from
my understanding in relation to perhaps

429
00:26:25,105 --> 00:26:29,295
sometimes when people get a diagnosis,
there's perhaps very short period of

430
00:26:29,295 --> 00:26:34,245
time from diagnosis to actually needing
palliative care services, uh, where

431
00:26:34,245 --> 00:26:36,385
they're, they're needing to be cared for.

432
00:26:36,764 --> 00:26:41,445
Do you suggest that it is probably
advantageous for people to, you know,

433
00:26:41,485 --> 00:26:44,995
pay attention to what's in their
area now before they even need it?

434
00:26:45,914 --> 00:26:47,194
Camilla: Yeah, I think so.

435
00:26:47,374 --> 00:26:48,814
I think that there is.

436
00:26:49,455 --> 00:26:53,685
It's a concern that if you wait till that
last month, that there may be waiting

437
00:26:53,685 --> 00:26:57,774
lists, there may be difficulties in
accessing things as soon as you need them.

438
00:26:58,285 --> 00:27:01,055
So to prepare ahead is really important.

439
00:27:01,415 --> 00:27:07,375
And to think about where, where do I
want my final months and days to be?

440
00:27:07,415 --> 00:27:08,544
Where do I want to live?

441
00:27:08,564 --> 00:27:10,165
Do I, do I want to be in a hospital?

442
00:27:10,215 --> 00:27:13,920
Do I want to be in a, Uh, at home.

443
00:27:13,990 --> 00:27:17,870
I know that in my own situation when
one of my family members died during

444
00:27:17,910 --> 00:27:24,540
COVID, who was an older person, she was
very concerned about going back home

445
00:27:24,630 --> 00:27:28,590
because she felt she wouldn't get the
level of care needed in home because of

446
00:27:28,590 --> 00:27:34,140
where all the services were at during
COVID in terms of lack of availability.

447
00:27:34,710 --> 00:27:38,659
So she ended up going into hospital
and she was, she never left.

448
00:27:38,669 --> 00:27:40,750
She was there for six
weeks until she died.

449
00:27:41,345 --> 00:27:46,735
And she had different services within the
hospital providing her end of life care.

450
00:27:47,125 --> 00:27:52,215
Now that's not optimum either, because
you don't find that all nurses and all

451
00:27:52,215 --> 00:27:54,355
doctors are trained in palliative care.

452
00:27:55,095 --> 00:27:59,314
So, you know, they would treat the
condition to keep her comfortable

453
00:27:59,314 --> 00:28:03,304
but wouldn't necessarily have
a great understanding about

454
00:28:03,764 --> 00:28:05,104
how to treat the symptoms.

455
00:28:06,060 --> 00:28:08,070
So that she had a comfortable end of life.

456
00:28:09,520 --> 00:28:13,940
Catherine: And is that something that
we should be perhaps introducing in the

457
00:28:13,940 --> 00:28:22,240
training of, of doctors and, uh, you know,
other nurses at their graduate level?

458
00:28:23,110 --> 00:28:27,299
Camilla: Yeah, so in, in undergraduate
courses, there is an introduction to

459
00:28:27,299 --> 00:28:31,570
palliative care in medical degrees and
in nursing degrees, but it's not enough.

460
00:28:32,120 --> 00:28:32,700
I guess.

461
00:28:32,925 --> 00:28:37,345
If you think about if you're a doctor or a
nurse, you have a bombardment of different

462
00:28:37,345 --> 00:28:41,565
specialties you have to learn in your
undergraduate degrees and think about.

463
00:28:41,725 --> 00:28:46,635
And if it's only one tiny part of
the whole qualification, it really

464
00:28:46,635 --> 00:28:50,454
relies on when they're doing their
professional development and postgrad.

465
00:28:50,755 --> 00:28:54,165
qualifications and there's
lots of different programs

466
00:28:54,185 --> 00:28:55,415
that have been developed.

467
00:28:55,715 --> 00:28:58,625
The Australian government's funded a
lot of those and they're excellent.

468
00:28:58,635 --> 00:29:03,745
You know, we've got end of life directions
in aged care for aged care workers.

469
00:29:03,995 --> 00:29:07,634
We've got the PEPA program, which is
the program of experience in palliative

470
00:29:07,665 --> 00:29:14,825
care, that Enables people to go into
and work in a palliative palliative

471
00:29:14,825 --> 00:29:19,264
care team for doctors and nurses to get
more training and understanding of what

472
00:29:19,265 --> 00:29:20,674
it's like to work in palliative care.

473
00:29:20,984 --> 00:29:25,985
We have reverse PEPA, which is where
the PEPA trainers go into sites and

474
00:29:25,985 --> 00:29:28,125
train the staff on those sites as well.

475
00:29:28,644 --> 00:29:33,255
So, and there's lots of different
postgraduate qualifications available, you

476
00:29:33,255 --> 00:29:36,185
know, that people can do if they have an
interest in working in palliative care.

477
00:29:37,004 --> 00:29:37,804
Having said that.

478
00:29:38,105 --> 00:29:41,035
We do have an issue, like most of
the health workforce, that we have an

479
00:29:41,045 --> 00:29:47,205
insufficient number of allied health
nurses and doctors working in palliative

480
00:29:47,205 --> 00:29:49,175
care to meet the need now as well.

481
00:29:50,074 --> 00:29:54,515
So with that health workforce crisis,
that Many of the peaks talk about

482
00:29:54,515 --> 00:29:59,215
is very real and it's just going to
grow unless we have some, you know,

483
00:29:59,425 --> 00:30:02,675
greater investment in thinking about
what are those skills needs, you know,

484
00:30:02,735 --> 00:30:07,505
things like not charging HECs for
those qualifications, making sure that

485
00:30:07,505 --> 00:30:09,225
people are backfilled when they can go.

486
00:30:09,950 --> 00:30:11,130
Um, and do their training.

487
00:30:11,630 --> 00:30:16,450
I was talking to a, an MP last year
who said to me that their husband was

488
00:30:16,450 --> 00:30:21,150
a GP in a rural area in Australia,
and that every time they wanted to do

489
00:30:21,150 --> 00:30:24,970
professional development, they had to
go to the capital city of their state.

490
00:30:25,430 --> 00:30:29,800
And that meant that they couldn't
be backfilled in their local area.

491
00:30:29,800 --> 00:30:31,060
There was no money for backfilling.

492
00:30:31,090 --> 00:30:34,870
So they just didn't access the
level of professional development

493
00:30:34,910 --> 00:30:36,020
that they would have liked.

494
00:30:36,310 --> 00:30:41,290
including palliative care, because they're
unable to get away, because there's

495
00:30:41,290 --> 00:30:43,450
such a shortage of GPs in rural areas.

496
00:30:43,520 --> 00:30:44,209
And,

497
00:30:45,090 --> 00:30:50,820
Catherine: and that might also give
some insight to a scenario that, uh, was

498
00:30:50,840 --> 00:30:55,640
mentioned to me this week that, uh, a
woman, the woman that had actually, you

499
00:30:55,640 --> 00:30:59,920
know, traveled seven, seven hours from
her home to take care of her father.

500
00:31:00,545 --> 00:31:06,315
Uh, she was there when her father was
diagnosed as being terminally ill.

501
00:31:06,765 --> 00:31:09,005
And that was, he has, has cancer.

502
00:31:09,405 --> 00:31:13,065
Uh, and that was an appointment
with a neurologist, uh, and then a

503
00:31:13,065 --> 00:31:14,905
neurosurgeon was a second appointment.

504
00:31:15,275 --> 00:31:19,155
And then it was the third
appointment that was the oncologist.

505
00:31:19,495 --> 00:31:23,565
And this, as you can imagine too,
in a rural area, trying to get

506
00:31:23,565 --> 00:31:27,785
into these appointments, uh, was
quite a period of time between

507
00:31:27,805 --> 00:31:29,975
each of these appointments and.

508
00:31:30,390 --> 00:31:36,530
She voiced frustration to me that,
uh, she, her, she knew that her father

509
00:31:36,530 --> 00:31:42,960
was terminal, but she didn't believe
that any of the neurosurgeon or the

510
00:31:43,030 --> 00:31:49,030
neurologist had actually mentioned
that he was terminal to him directly.

511
00:31:49,730 --> 00:31:51,890
Have you heard of scenarios like that?

512
00:31:52,390 --> 00:31:53,040
Camilla: Absolutely.

513
00:31:53,050 --> 00:31:57,510
So I think that There's a number
of ways these scenarios unfold.

514
00:31:57,610 --> 00:32:03,350
One is that you have doctors, whether
they be specialists or GPs or other,

515
00:32:03,750 --> 00:32:06,300
that give really clear communication.

516
00:32:06,330 --> 00:32:10,410
And so when the patient goes in, the
person goes in and they might have

517
00:32:10,410 --> 00:32:13,870
a carer or other family members with
them, everyone walks out of the room

518
00:32:13,870 --> 00:32:16,820
with a really clear understanding
with where their illness is at.

519
00:32:16,840 --> 00:32:18,060
So that's great.

520
00:32:18,525 --> 00:32:23,815
But we hear more commonly scenarios
still occurring where doctors might use

521
00:32:23,815 --> 00:32:28,965
jargon, that medical jargon, that they
feel they've told the person in a medical

522
00:32:29,005 --> 00:32:33,025
way about what's happening and that
person's gone, don't understand that,

523
00:32:33,075 --> 00:32:36,685
but okay, it sounds like everything's
going along okay and then leaves.

524
00:32:37,430 --> 00:32:40,460
And then you have another scenario
where they have explained to that

525
00:32:40,460 --> 00:32:44,120
person, but that person's in shock
and they don't absorb everything.

526
00:32:44,560 --> 00:32:47,210
So if you think about, when
you're given that sort of news,

527
00:32:47,210 --> 00:32:48,550
it can be highly distressing.

528
00:32:48,590 --> 00:32:51,640
And when I worked as a social worker
in palliative care, I commonly found

529
00:32:52,020 --> 00:32:55,455
that when I spoke to the families
and I said, to, you know, different

530
00:32:55,455 --> 00:32:57,175
family members and the patient.

531
00:32:57,535 --> 00:32:59,985
Tell me what your understanding
is about where your illness is

532
00:32:59,985 --> 00:33:01,325
at and what the doctor said.

533
00:33:01,755 --> 00:33:05,205
In that room, you can commonly find
that people had different understandings

534
00:33:05,205 --> 00:33:06,535
of what was said at that meeting.

535
00:33:07,055 --> 00:33:10,935
And so part of my job was to make sure
everybody was on the same page and that

536
00:33:10,935 --> 00:33:14,735
they all understood that, you know,
understood together and collectively

537
00:33:15,135 --> 00:33:16,895
where that person's situation was at.

538
00:33:17,445 --> 00:33:21,715
And then you do get doctors who
don't give the information for.

539
00:33:22,325 --> 00:33:26,745
whatever reasons, either they're not
confident that that person is now going

540
00:33:26,805 --> 00:33:29,165
to become terminal, as you said, one day.

541
00:33:29,565 --> 00:33:33,935
And so they're just holding back
till they're absolutely sure, and

542
00:33:33,935 --> 00:33:37,465
that can be then too late in terms
of providing that information.

543
00:33:37,885 --> 00:33:40,675
You know, I've never come across
a doctor who doesn't care.

544
00:33:41,410 --> 00:33:45,060
I think people just have different
abilities to communicate.

545
00:33:45,140 --> 00:33:49,130
And then on the flip side of that,
people who are at the other side,

546
00:33:49,170 --> 00:33:54,160
who are the family and the patient,
digest information in different ways.

547
00:33:55,180 --> 00:33:59,190
I actually had that happen in my
own family when, um, my mother was

548
00:33:59,190 --> 00:34:04,110
diagnosed last year that we had a
number of us who walked away from

549
00:34:04,110 --> 00:34:07,830
what we'd been told by nurses and
doctors with a different understanding.

550
00:34:07,830 --> 00:34:10,870
It took a number of conversations
for us to all be on the same page.

551
00:34:12,000 --> 00:34:16,370
Catherine: So would you say that that's
also a key thing, uh, perhaps that when

552
00:34:16,370 --> 00:34:21,500
you are, uh, attending a, a doctor's
appointment, uh, and especially if

553
00:34:21,500 --> 00:34:26,730
it's a specialist appointment that
you're waiting on a diagnosis, that

554
00:34:26,740 --> 00:34:32,690
you have someone go along with you
just so there's someone to talk to, uh?

555
00:34:32,700 --> 00:34:33,190
Yeah,

556
00:34:33,340 --> 00:34:33,830
Camilla: absolutely.

557
00:34:33,850 --> 00:34:36,650
And look, even simple things
like either writing the

558
00:34:36,650 --> 00:34:39,680
questions down before you go in.

559
00:34:39,930 --> 00:34:43,590
and preparing yourself and going in
and asking the questions of everything

560
00:34:43,590 --> 00:34:47,660
you want to know and then writing the
answers or doing it if you're, if you're

561
00:34:47,680 --> 00:34:52,610
technologically, you know, experienced
doing it on your phone or whatever.

562
00:34:53,250 --> 00:34:57,590
But being prepared because doctors are
very busy people and often they give

563
00:34:57,590 --> 00:35:03,275
you, You know, allocations of 15 minute,
half hour slots, you know, so everything

564
00:35:03,275 --> 00:35:05,335
happens in a bit of a rush quite often.

565
00:35:05,725 --> 00:35:08,805
So making sure you've got those
questions with you and writing

566
00:35:08,805 --> 00:35:10,775
down the answers and clarifying.

567
00:35:11,585 --> 00:35:13,605
So you've said this, does it mean that?

568
00:35:14,085 --> 00:35:14,995
Is that what you're saying?

569
00:35:15,260 --> 00:35:19,280
You know, making sure you clarify if
you're unsure rather than just going,

570
00:35:19,310 --> 00:35:20,470
all right, they've just said that.

571
00:35:21,100 --> 00:35:23,730
Okay, I'll just take that away
and I'll Google it or whatever.

572
00:35:24,330 --> 00:35:24,710
Catherine: Yeah.

573
00:35:24,890 --> 00:35:26,810
And you mentioned your
role as a social worker.

574
00:35:26,830 --> 00:35:30,680
Is that one of the allied services
that you could reach out to if you

575
00:35:30,690 --> 00:35:34,800
have been diagnosed with a terminal
illness and you, you need support?

576
00:35:35,860 --> 00:35:39,605
Camilla: So I think what's happened with
funding, is I'm commonly hearing there's

577
00:35:39,615 --> 00:35:41,665
less and less allied health money.

578
00:35:42,175 --> 00:35:46,075
So, I know when we talk to palliative
care social workers Australia,

579
00:35:46,475 --> 00:35:50,515
there's far fewer social workers in
palliative care now than when I worked

580
00:35:50,515 --> 00:35:52,205
in palliative care 25 years ago.

581
00:35:52,845 --> 00:35:58,135
So, that leads us to think that
there's much more investment

582
00:35:58,145 --> 00:36:04,085
happening into the nursing and the
medical and less into allied health.

583
00:36:04,395 --> 00:36:08,975
So I was part of a specialist palliative
care service and, you know, I'm still

584
00:36:08,975 --> 00:36:12,765
coming across social workers who were,
who are part of specialist palliative

585
00:36:12,865 --> 00:36:17,635
care services, but quite commonly what I'm
also hearing is that they have other roles

586
00:36:17,655 --> 00:36:21,265
in the hospitals, so they won't just be
working with the palliative care service,

587
00:36:21,265 --> 00:36:24,655
they might be working with a whole
range of other areas in the hospital.

588
00:36:25,325 --> 00:36:28,395
So I think that means there's a
resourcing issue there as well.

589
00:36:29,315 --> 00:36:33,885
Catherine: Is there like patient advocacy
services that perhaps someone could use?

590
00:36:34,485 --> 00:36:38,475
Camilla: So that again is a bit of a
postcode lottery as to whether there's

591
00:36:38,505 --> 00:36:40,805
patient advocacy services available.

592
00:36:41,525 --> 00:36:43,175
Catherine: Okay, okay,
that's good to know.

593
00:36:43,525 --> 00:36:50,415
So it really does seem to me from our
conversations that having a good network

594
00:36:50,415 --> 00:36:55,765
of support of friends and family,
if you can, is really key if you're

595
00:36:55,815 --> 00:36:57,565
diagnosed with a terminal illness.

596
00:36:58,495 --> 00:36:59,445
Camilla: Absolutely.

597
00:36:59,705 --> 00:37:02,865
And look, regardless of what
specialist palliative care services

598
00:37:02,865 --> 00:37:06,315
are available or other palliative
care services through GPs, you'd be

599
00:37:06,315 --> 00:37:09,355
amazed at the number of activities
that you might need support with.

600
00:37:10,095 --> 00:37:15,355
As your, as your illness progresses,
so just things like shopping, you

601
00:37:15,355 --> 00:37:20,955
know, getting to appointments, doing
the washing, you know, uh, attending

602
00:37:21,005 --> 00:37:25,045
important events with family and
friends, having someone there with you,

603
00:37:25,615 --> 00:37:27,575
uh, if you have equipment with you.

604
00:37:28,120 --> 00:37:31,180
You know, because you're now in
a situation where you need either

605
00:37:31,180 --> 00:37:35,510
walkers or you need, you know, other
sorts of equipment, a syringe driver

606
00:37:35,510 --> 00:37:39,760
with you or whatever that might be,
having someone that can help support

607
00:37:39,760 --> 00:37:41,810
you at that time, those events.

608
00:37:42,200 --> 00:37:46,310
So it's really, like any other
very serious illness, when you're

609
00:37:46,310 --> 00:37:50,450
unwell, you need a range of
different supports to, to help you.

610
00:37:51,020 --> 00:37:53,340
Thinking about who is
best placed to do that.

611
00:37:54,500 --> 00:37:59,055
We know that, It's from
organizations like Aging Asia.

612
00:37:59,095 --> 00:38:03,875
We know that in different parts of the
world and including Australia, that in

613
00:38:03,875 --> 00:38:08,725
previous generations, it would be the
daughters primarily that would look after

614
00:38:08,775 --> 00:38:11,345
aging parents as they become palliative.

615
00:38:11,895 --> 00:38:14,975
But what we now know is that people
in their 50s like myself are no

616
00:38:14,975 --> 00:38:19,890
longer providing Or can no longer
take big periods of time out of

617
00:38:19,890 --> 00:38:24,650
work to care for older relatives
as they're dying because we're all

618
00:38:24,650 --> 00:38:27,860
having to work full time to sustain.

619
00:38:28,500 --> 00:38:33,160
You know, our mortgages, our, our
lifestyles, and we know that, you

620
00:38:33,160 --> 00:38:38,060
know, social benefits, Centrelink
benefits are not sufficient for most

621
00:38:38,060 --> 00:38:42,290
people, particularly living in cities
where rent is expensive, to be able

622
00:38:42,290 --> 00:38:45,930
to take time out of work and go on
Centrelink benefits to care for someone.

623
00:38:46,600 --> 00:38:48,289
So, we, we have less and less people.

624
00:38:48,430 --> 00:38:49,530
errors available.

625
00:38:51,080 --> 00:38:54,580
Catherine: And, um, I know that
we have spoken in the past,

626
00:38:54,590 --> 00:38:59,180
Camilla, about, um, those people
that are technologically savvy.

627
00:38:59,530 --> 00:39:02,670
There is a tool that you've
been working on with La Trobe

628
00:39:02,690 --> 00:39:05,320
University and Andrea Grindod there.

629
00:39:06,060 --> 00:39:07,650
Can you tell me a little bit about that?

630
00:39:07,650 --> 00:39:11,860
Because that seems to be one of
the key things about the, the

631
00:39:11,860 --> 00:39:15,610
tasks that you can get help with
from someone who's not an allied

632
00:39:15,610 --> 00:39:17,700
service, but more family and friends.

633
00:39:18,360 --> 00:39:19,090
Camilla: Absolutely.

634
00:39:19,160 --> 00:39:22,330
I mean, obviously Andrew's a good
person to talk to about in more detail

635
00:39:22,330 --> 00:39:26,890
about the help app, but the help app
has been developed with funding from

636
00:39:26,890 --> 00:39:33,820
the Wicking Trust and that app is
going to be one that assists you to

637
00:39:33,830 --> 00:39:39,220
find out what networks you have in
your area and how they can assist you.

638
00:39:39,270 --> 00:39:42,660
And it actually is almost
like a, a walking tablet.

639
00:39:43,520 --> 00:39:47,500
of information that talks and
helps you to think about what you

640
00:39:47,500 --> 00:39:50,920
might access where and when, and
helps you to put those connections

641
00:39:50,920 --> 00:39:53,030
in into your specific community.

642
00:39:53,520 --> 00:39:57,410
And so, for example, say that you had
a library that had a support group,

643
00:39:57,810 --> 00:40:00,610
you might say, oh, that support
group for grief and loss, that

644
00:40:00,610 --> 00:40:02,080
might be really great for my carer.

645
00:40:02,450 --> 00:40:05,850
So, you know, if I have a family
carer, so we might put that into the

646
00:40:05,870 --> 00:40:09,590
app, because that's something in my
particular area that's really helpful.

647
00:40:09,620 --> 00:40:11,440
There might be something
at my neighbourhood centre.

648
00:40:11,650 --> 00:40:16,600
Or there might be a community transport
option for me as someone who's

649
00:40:16,600 --> 00:40:19,500
palliative, you know, because most
community transports for people with

650
00:40:19,540 --> 00:40:21,150
disabilities or people who are older.

651
00:40:21,920 --> 00:40:26,490
So, you know, there may be
flexible options in my area.

652
00:40:26,810 --> 00:40:29,640
So it really helps you gather,
to gather all that information

653
00:40:29,640 --> 00:40:31,140
and have it in one place.

654
00:40:31,170 --> 00:40:33,830
And it also helps you to
connect in with those people

655
00:40:33,840 --> 00:40:35,120
on that app, through that app.

656
00:40:36,130 --> 00:40:36,690
Catherine: Fantastic.

657
00:40:36,690 --> 00:40:42,200
And that can just be downloaded on all
of the usual app platforms, I'm assuming?

658
00:40:42,945 --> 00:40:46,265
Camilla: Yeah, so I think it would
be great if you were to be able to

659
00:40:46,265 --> 00:40:49,505
provide the information through your
website on connecting through to

660
00:40:49,535 --> 00:40:51,465
the help app and Andrew's program.

661
00:40:51,975 --> 00:40:52,575
Catherine: Fantastic.

662
00:40:52,575 --> 00:40:53,725
More than happy to do that.

663
00:40:54,345 --> 00:40:54,765
Now.

664
00:40:54,775 --> 00:40:54,835
Thank you.

665
00:40:54,835 --> 00:40:54,934
Bye.

666
00:40:55,595 --> 00:40:58,775
Palliative Care Australia has recently
had a bit of a brand refresh, I

667
00:40:58,775 --> 00:41:04,895
noticed, uh, and there's a tagline
now saying, Matters of Life and Death.

668
00:41:05,535 --> 00:41:09,865
Can you talk me through that phrase
and what it personally means to you?

669
00:41:10,945 --> 00:41:14,785
Camilla: Yeah, so the rebranding
came through an evolutionary process.

670
00:41:14,825 --> 00:41:16,705
We developed the heart symbol.

671
00:41:16,855 --> 00:41:20,175
Which is based on an
emoji, which is about care.

672
00:41:20,565 --> 00:41:22,505
That particular emoji is about care.

673
00:41:22,505 --> 00:41:23,685
It's not about romantic love.

674
00:41:24,015 --> 00:41:26,805
It's about care and it's a marigold color.

675
00:41:27,365 --> 00:41:30,455
And we trialed it last year during
National Palliative Care Week.

676
00:41:30,575 --> 00:41:33,435
And we had such an incredible response.

677
00:41:33,965 --> 00:41:38,205
Uh, we'd captured pictures of
federal MPs all wearing it in, in

678
00:41:38,215 --> 00:41:42,475
Senate and, uh, in the House of
Representatives during sitting weeks.

679
00:41:42,925 --> 00:41:43,545
And.

680
00:41:43,825 --> 00:41:48,335
There was just an overwhelming
response to it, that it really captured

681
00:41:48,695 --> 00:41:52,375
what people were thinking about
in terms of people close to them.

682
00:41:52,915 --> 00:41:58,435
So, the, the heart is going to be our
symbol for National Palliative Care

683
00:41:58,435 --> 00:41:59,985
Week, but we're also going to rebrand.

684
00:42:01,140 --> 00:42:04,920
Our palliative care Australia and most
of our states and territories will also

685
00:42:04,920 --> 00:42:07,120
start to use that, that heart as well.

686
00:42:07,440 --> 00:42:12,300
Matters of life and death is really
a phrase which captures where

687
00:42:12,300 --> 00:42:16,010
we're at in our society about
thinking of not just about matters

688
00:42:16,010 --> 00:42:17,260
of life, but matters of death.

689
00:42:17,950 --> 00:42:22,210
So if we, if we think about death as
being one of the last taboo topics,

690
00:42:22,230 --> 00:42:23,480
we want to break through that.

691
00:42:23,480 --> 00:42:24,760
You know, we now talk about mental health.

692
00:42:24,760 --> 00:42:25,840
We now talk about sex.

693
00:42:26,070 --> 00:42:29,580
We should be talking about death on an
ongoing basis, particularly post COVID.

694
00:42:29,930 --> 00:42:33,080
where people's mortality
was very much front of mind.

695
00:42:33,080 --> 00:42:36,630
So let's, let's take that
conversation forward as a society

696
00:42:36,630 --> 00:42:37,980
and say we'll all die one day.

697
00:42:38,510 --> 00:42:42,790
You know, let's make it, if
we can, a really great quality

698
00:42:42,810 --> 00:42:44,150
end of life experience.

699
00:42:44,410 --> 00:42:47,180
But, but more importantly,
let's live until we die.

700
00:42:47,420 --> 00:42:52,750
Let's not go I'm going to die in a year
or two years of this particular diagnosis

701
00:42:53,060 --> 00:42:54,850
and I'm only going to focus on the end.

702
00:42:55,120 --> 00:42:58,150
Let's make sure that we do our
planning and think about what

703
00:42:58,150 --> 00:42:59,480
we can do about quality of life.

704
00:42:59,480 --> 00:43:00,590
What's on our bucket list?

705
00:43:00,980 --> 00:43:01,750
Who do we want to see?

706
00:43:01,760 --> 00:43:02,870
Who do we want to connect with?

707
00:43:03,330 --> 00:43:07,860
Because Matters of life and death is
really about saying to people, think

708
00:43:07,860 --> 00:43:12,210
ahead, start to plan, think about who you
want to have around you, think about your

709
00:43:12,210 --> 00:43:17,490
relationships, because I can tell you, if
you talk to anyone who's ever worked in

710
00:43:17,490 --> 00:43:22,359
palliative care, they will always say to
you that as people are preparing to die,

711
00:43:22,359 --> 00:43:26,520
they always say the most important thing
to them is about the quality of their

712
00:43:26,520 --> 00:43:28,120
relationships with the people they love.

713
00:43:29,410 --> 00:43:31,594
And that is what the meaning of life is.

714
00:43:32,185 --> 00:43:32,705
is about.

715
00:43:33,215 --> 00:43:36,655
You might have other things that motivate
you in life, whether it's your work

716
00:43:36,655 --> 00:43:41,085
and your career, whether it's your
family, whether it's your footy team,

717
00:43:41,395 --> 00:43:46,065
whether it be rugby or AFL or soccer,
whatever that might be, or nipple.

718
00:43:46,315 --> 00:43:49,575
But, you know, it's, it's, It's
one of those things that give

719
00:43:49,575 --> 00:43:51,025
you a real quality of life.

720
00:43:51,345 --> 00:43:53,715
And let's, these are the
matters of life and death.

721
00:43:53,775 --> 00:43:55,695
Let's talk about all those things.

722
00:43:55,975 --> 00:44:00,455
Let's, as a society, start to embrace
those discussions and make sure at

723
00:44:00,455 --> 00:44:04,395
the same time, we have those clinical
services that you might need at various

724
00:44:04,395 --> 00:44:06,915
points in your journey to support you.

725
00:44:07,505 --> 00:44:11,685
So this year, National Palliative Care
Week, which is the 19th to the 25th

726
00:44:11,765 --> 00:44:15,425
of May, it's always about around the
same time each year, we're going to

727
00:44:15,605 --> 00:44:17,235
take that matters of life and death.

728
00:44:17,995 --> 00:44:18,625
logo.

729
00:44:19,265 --> 00:44:21,695
And we're going to talk,
really focus on the people at

730
00:44:21,695 --> 00:44:23,485
the heart of palliative care.

731
00:44:24,115 --> 00:44:27,065
We're going to have case studies and
scenarios and people talking about their

732
00:44:27,065 --> 00:44:31,675
own experiences so that the broader
community and the broader health workforce

733
00:44:31,705 --> 00:44:36,725
can see how palliative care actually
is delivered and what's involved.

734
00:44:37,175 --> 00:44:40,405
We know from market research that
most people in Australia know what

735
00:44:40,405 --> 00:44:42,115
the term palliative care means.

736
00:44:42,455 --> 00:44:47,155
They think of it, They think of it as
equals end of life care, right, so it's

737
00:44:47,165 --> 00:44:50,305
a bit bigger than that but generally
they know roughly what it means.

738
00:44:50,625 --> 00:44:55,105
What they don't know is what's
involved and so this year our focus is

739
00:44:55,105 --> 00:44:58,715
going to be really delving into what
can be involved in palliative care

740
00:44:58,755 --> 00:45:00,115
during National Palliative Care Week.

741
00:45:01,685 --> 00:45:06,045
Catherine: And that's perhaps a good
segue to ask, what have you done to

742
00:45:06,045 --> 00:45:08,185
prepare for your own death, Camilla?

743
00:45:09,105 --> 00:45:14,705
Camilla: Well, do you know, my husband and
I redid our wills last year, and we lost

744
00:45:14,705 --> 00:45:16,965
three parents in three years between us.

745
00:45:17,665 --> 00:45:21,974
And we really learned from a
lot of their experiences about

746
00:45:21,975 --> 00:45:23,005
what worked and what didn't.

747
00:45:24,025 --> 00:45:28,435
We've had discussions within our own
immediate family about what the sort

748
00:45:28,435 --> 00:45:33,165
of things we'd like to have in our
funerals or we think would be, you

749
00:45:33,165 --> 00:45:35,215
know, a way to celebrate our lives.

750
00:45:35,655 --> 00:45:39,145
We've talked a lot about, and which
is really important that, you know,

751
00:45:39,165 --> 00:45:40,865
the family's all on the same page.

752
00:45:41,535 --> 00:45:46,195
Uh, and, uh, I think although we
don't have advanced care plans

753
00:45:46,195 --> 00:45:49,425
yet, we've definitely tackled
the organ donation discussion.

754
00:45:50,115 --> 00:45:54,295
And so we're really clear in our family
about who wants to donate their organs

755
00:45:54,295 --> 00:45:56,915
and who doesn't and which organs, etc.

756
00:45:57,555 --> 00:46:00,015
And I think we are, as a family, of
course, I've worked in palliative

757
00:46:00,695 --> 00:46:03,435
care, you know, like, I've been
involved in and out for decades.

758
00:46:03,495 --> 00:46:06,875
My family can't escape discussions
about life limiting illnesses,

759
00:46:06,895 --> 00:46:08,015
preparing for death and dying.

760
00:46:08,245 --> 00:46:10,635
So we have lots of open
discussions all the time.

761
00:46:10,985 --> 00:46:13,835
We've talked about where we'd want
to die and what that might look like.

762
00:46:14,385 --> 00:46:16,175
And it's not all morbid.

763
00:46:16,495 --> 00:46:18,435
Sometimes they're very funny discussions.

764
00:46:18,865 --> 00:46:23,335
But in fact, with our children, who are
now adults, it's actually also good for

765
00:46:23,335 --> 00:46:25,325
them to know what, what we would like.

766
00:46:25,680 --> 00:46:30,310
And to start to think in those years
to come, you know, how would they

767
00:46:30,400 --> 00:46:34,210
support, what would that support us,
what could that look like and what, what

768
00:46:34,210 --> 00:46:36,100
isn't going to be available, you know?

769
00:46:36,430 --> 00:46:40,450
So yeah, we've, we've had lots of
discussions, but I commonly come

770
00:46:40,450 --> 00:46:44,300
across families of friends of mine
who don't want to talk about it still.

771
00:46:44,900 --> 00:46:48,500
And I think, you know, we're, I'm
part of an era of people that talks

772
00:46:48,500 --> 00:46:53,100
about things a lot more openly and I
say to them, have those discussions.

773
00:46:53,790 --> 00:46:55,650
You know, what does that look like?

774
00:46:55,980 --> 00:46:59,670
It's really the, and the baby
boomers should also be more open.

775
00:46:59,670 --> 00:47:01,170
They're a much more open generation.

776
00:47:01,170 --> 00:47:06,120
It's the older generation before
then, after, before them, that really

777
00:47:06,570 --> 00:47:08,430
death and dying is extremely taboo.

778
00:47:08,940 --> 00:47:12,060
And look, there are some things
about death and dying, which are.

779
00:47:12,545 --> 00:47:15,315
You know, if you die when you're
older, that's often less sad

780
00:47:15,365 --> 00:47:17,135
because it's a life lived well.

781
00:47:17,575 --> 00:47:20,825
And it's, you'll always miss those
people, but it's not as traumatic.

782
00:47:20,855 --> 00:47:25,325
Losing a child or a sibling when
you're young can be really traumatic.

783
00:47:25,325 --> 00:47:29,535
And I don't want to ever underestimate
the type of level of support

784
00:47:29,565 --> 00:47:31,585
that's needed in those situations.

785
00:47:32,910 --> 00:47:36,720
Catherine: Uh, it's interesting that
you mentioned that because I was just

786
00:47:36,720 --> 00:47:42,560
going to, to talk about that in July
last year, uh, you released a report,

787
00:47:42,960 --> 00:47:47,940
or not a report, but the Pediatric
Palliative Care National Action Plan in

788
00:47:47,940 --> 00:47:51,680
partnership with Pediatric Palliative
Care Australia in New Zealand.

789
00:47:52,300 --> 00:47:55,800
I believe it was the first of the
kind in Australia that was released.

790
00:47:56,425 --> 00:48:01,995
Can you talk me through the significance
of that plan and the impact it'll

791
00:48:02,005 --> 00:48:05,855
have on, you know, people with life
limiting illness and their families?

792
00:48:06,365 --> 00:48:08,265
Camilla: Oh, look, I mean,
it was just incredible.

793
00:48:08,265 --> 00:48:12,455
That was the result of three
years of a project to work with

794
00:48:12,895 --> 00:48:16,875
clinical stakeholders, families,
and some patients themselves,

795
00:48:16,895 --> 00:48:18,985
some young people, researchers.

796
00:48:20,175 --> 00:48:24,265
politicians, government departments
at state levels and at Commonwealth

797
00:48:24,265 --> 00:48:26,315
level to talk about what this needs.

798
00:48:26,335 --> 00:48:29,255
Now, while it might be a relatively
small group of somewhere between eight

799
00:48:29,255 --> 00:48:33,565
and ten thousand young people and
children who die each year, it's really

800
00:48:33,565 --> 00:48:38,485
important that we connect all the
services together for them at that point.

801
00:48:38,925 --> 00:48:43,835
So, it's got bipartisan support, so
both the Liberals, the previous Liberal

802
00:48:43,845 --> 00:48:48,445
Health Minister initiated it, Greg
Hunt, the development of it, but I'm

803
00:48:48,445 --> 00:48:52,210
really delighted that Mark Butler, in
the current Labor government, has has

804
00:48:52,210 --> 00:48:56,780
also then rolled out another project
of a series of activities that help

805
00:48:57,110 --> 00:48:59,040
support the implementation of that plan.

806
00:48:59,340 --> 00:49:04,450
And that plan is of course a big national
strategic plan about how do we ensure

807
00:49:05,140 --> 00:49:10,000
that A& E or ED and hospitals, so
accident and emergency EDs, connect in

808
00:49:10,000 --> 00:49:15,020
with um, paediatric wards, connect in
with specialist areas such as oncology.

809
00:49:15,410 --> 00:49:19,125
And I say oncology because the
majority of Children who die that

810
00:49:19,125 --> 00:49:23,815
are recognised in terms of capturing
data about children with cancer, but

811
00:49:23,815 --> 00:49:27,645
also children with disabilities who
have life limiting illnesses as well.

812
00:49:28,025 --> 00:49:32,085
How do we ensure the disability sector
works with the health sector, works with

813
00:49:32,555 --> 00:49:37,125
all these different components of health
to make sure that the journey for the

814
00:49:37,205 --> 00:49:39,155
child and young person and their family.

815
00:49:39,785 --> 00:49:43,945
is as positive and as smooth as it can be.

816
00:49:44,495 --> 00:49:48,135
And interestingly, one of the
things we haven't mentioned is that

817
00:49:48,205 --> 00:49:50,135
palliative care goes beyond death.

818
00:49:50,555 --> 00:49:55,235
It's actually about grief and loss
support also for the family post death.

819
00:49:55,745 --> 00:50:02,430
And so we need to ensure that we're
providing those, those families with,

820
00:50:02,930 --> 00:50:05,030
with the options of getting that support.

821
00:50:05,410 --> 00:50:09,100
And there was a movie released last
year called Live the Life You Please.

822
00:50:09,380 --> 00:50:13,160
And Simon Manwaring, who narrated that,
who also talked about his own story.

823
00:50:13,170 --> 00:50:16,460
He's actually on our board now at
Palliative Care Australia, but he talked

824
00:50:16,460 --> 00:50:20,390
about his own story of losing both his
son and his wife, who both died within the

825
00:50:20,390 --> 00:50:23,100
space of a couple of years of each other.

826
00:50:23,480 --> 00:50:28,610
And Both had life limiting illnesses
and how that affected his family

827
00:50:28,610 --> 00:50:29,950
and what worked and what didn't.

828
00:50:30,400 --> 00:50:34,690
So, those movies and those stories
are really important to share

829
00:50:34,700 --> 00:50:38,170
about the importance of pediatric
palliative care as well and how

830
00:50:38,170 --> 00:50:40,180
we need to have a focus on that.

831
00:50:40,260 --> 00:50:43,630
Because prior to the National
Action Plan, there wasn't a national

832
00:50:43,630 --> 00:50:45,239
strategy and a national focus.

833
00:50:47,380 --> 00:50:50,560
Catherine: That surprises me, given
the numbers that you actually say, but

834
00:50:50,980 --> 00:50:57,220
it's good that it now has been brought
to the floor, uh, and just on that,

835
00:50:57,390 --> 00:51:01,680
that, that film that you mentioned,
it touches a little bit from memory,

836
00:51:01,680 --> 00:51:05,180
it touches a little bit on voluntary
assisted dying as well, does it?

837
00:51:05,815 --> 00:51:08,555
Camilla: I think it just mentions
it, the focus is really palliative

838
00:51:08,555 --> 00:51:13,955
care, and voluntary assisted dying and
palliative care are two very important

839
00:51:14,135 --> 00:51:19,955
programs, so they're not one and the
same, but they need to align and,

840
00:51:20,055 --> 00:51:21,705
and where possible, work together.

841
00:51:22,045 --> 00:51:26,110
So, our position is that, Voluntary
Assisted Dying is very much an

842
00:51:26,110 --> 00:51:30,310
individual's choice about whether
they choose to, to go down the

843
00:51:30,310 --> 00:51:31,920
Voluntary Assisted Dying path or not.

844
00:51:31,920 --> 00:51:34,550
Palliative Care is a medical specialty.

845
00:51:34,550 --> 00:51:36,340
It is not Voluntary Assisted Dying.

846
00:51:36,700 --> 00:51:43,430
It's actually assisting a person
to have comfort and quality care

847
00:51:43,440 --> 00:51:45,070
until the end of their natural life.

848
00:51:45,810 --> 00:51:50,290
Voluntary Assisted Dying is
about people choosing to finish

849
00:51:50,290 --> 00:51:51,590
their life at a certain point.

850
00:51:52,340 --> 00:51:57,120
So therefore, the Voluntary
Assisted Dying practitioners

851
00:51:57,690 --> 00:51:59,200
are involved in a different set.

852
00:52:00,170 --> 00:52:02,340
of medical procedures to make that happen.

853
00:52:02,850 --> 00:52:07,850
So every state and territory, it's not
a national set of laws, it's a state

854
00:52:07,850 --> 00:52:11,760
and territory level responsibility
and they all have different laws

855
00:52:11,790 --> 00:52:16,380
and rules around when people can
engage in discussion about voluntary

856
00:52:16,380 --> 00:52:18,270
assisted dying, who they engage with.

857
00:52:18,850 --> 00:52:23,610
But what we also say is that people
should have the choice of palliative

858
00:52:23,610 --> 00:52:28,140
care and they should be able to receive
palliative care right up until they push

859
00:52:28,140 --> 00:52:31,640
that button, just to use an analogy,
push the button for end of life.

860
00:52:32,140 --> 00:52:36,500
So it's not one or the other necessarily,
it can be that they actually work.

861
00:52:37,165 --> 00:52:41,385
together, that the palliative care
team can deliver that, you know,

862
00:52:42,045 --> 00:52:45,125
palliative care, end of life care,
right up until that point, that their

863
00:52:45,125 --> 00:52:49,825
voluntary assisted dying practitioner
goes forward with the implementation

864
00:52:49,825 --> 00:52:51,735
of that voluntary assisted dying plan.

865
00:52:52,525 --> 00:52:55,625
There are some palliative care
practitioners who've also trained

866
00:52:55,635 --> 00:52:59,395
to become voluntary assisted dying
practitioners, and that may increase

867
00:52:59,395 --> 00:53:05,685
over time, but we're very clear it's
two very different medical processes.

868
00:53:06,940 --> 00:53:09,280
Catherine: Thank you for clarifying
that one for me, Camilla.

869
00:53:09,730 --> 00:53:14,960
Another question that I have is
around, you mentioned the MyGov,

870
00:53:15,330 --> 00:53:18,320
uh, or My Aged Care, I believe.

871
00:53:18,710 --> 00:53:24,930
So, can you tell me, how does that, is
that process as part of the assessments

872
00:53:25,210 --> 00:53:26,850
of what you need for home help?

873
00:53:26,910 --> 00:53:29,410
Like, talk me through that a
little bit, and is that something

874
00:53:29,410 --> 00:53:30,430
that we should be looking at?

875
00:53:30,930 --> 00:53:37,190
Because I'm just sort of thinking, is that
I had my mother who's 85 this year, uh,

876
00:53:37,220 --> 00:53:42,670
I had her sort of connect with her local
council, uh, and get an assessment done.

877
00:53:42,980 --> 00:53:44,380
Is that what that process is?

878
00:53:45,995 --> 00:53:49,535
Camilla: Uh, so different, different
areas administer it in a different way.

879
00:53:49,535 --> 00:53:51,155
But My Aged Care is a Commonwealth.

880
00:53:51,185 --> 00:53:57,725
It's a national program, and so my
Aged Care is that once you're over 65,

881
00:53:58,385 --> 00:54:04,605
if you have need for in-Home support,
then you will get an assessment done.

882
00:54:04,605 --> 00:54:10,625
Now, your assessment will be done through
My Aged Care assistor, uh, referrals.

883
00:54:10,655 --> 00:54:15,305
You can either self-refer, or it can
be referred through a team geriatric.

884
00:54:15,515 --> 00:54:16,435
assessment unit.

885
00:54:16,855 --> 00:54:20,735
So there's a range of ways to get entry
into My Aged Care, but essentially

886
00:54:20,735 --> 00:54:25,510
an assessment is done which looks
at what your functionality is.

887
00:54:25,960 --> 00:54:30,950
And as your functionality changes, you
might start with just very little need.

888
00:54:30,950 --> 00:54:34,770
You might just have housework, you know,
once a fortnight or whatever it might be.

889
00:54:35,280 --> 00:54:38,970
But then as your illnesses may not be
life limiting illness necessary, but

890
00:54:38,970 --> 00:54:42,860
as your illnesses progress, then you
get reassessed to different levels.

891
00:54:43,210 --> 00:54:48,860
And in, Um, MyAgeCare, if you're
palliative, you are upped to

892
00:54:48,860 --> 00:54:50,090
one of the highest levels.

893
00:54:50,510 --> 00:54:54,640
So you're level three, level
four, you know, for MyAgeCare.

894
00:54:55,250 --> 00:54:59,720
And I think the in home care program,
when that's reviewed this year,

895
00:55:00,430 --> 00:55:05,420
they'll be looking at a category for
palliative care included in that.

896
00:55:05,490 --> 00:55:09,320
That's our understanding that that's the
direction they're exploring at the moment.

897
00:55:09,455 --> 00:55:15,235
Catherine: So, if, and just help me
with my understanding here, so it

898
00:55:15,235 --> 00:55:21,695
is, is it advisable that, uh, if you
are over the age of 65 that you, and

899
00:55:21,695 --> 00:55:25,845
you need support in the home, that
you start that assessment process

900
00:55:25,845 --> 00:55:28,835
before you really need it, or,

901
00:55:30,055 --> 00:55:31,545
Camilla: to get you sort
of on that, on that path?

902
00:55:32,775 --> 00:55:34,315
That's a good question about really need.

903
00:55:34,945 --> 00:55:36,509
I think that it's.

904
00:55:37,410 --> 00:55:42,770
As you feel that you're unable to function
doing certain activities, whether it's

905
00:55:42,770 --> 00:55:47,410
hanging out washing because you've got
certain conditions in your shoulders or

906
00:55:47,410 --> 00:55:51,840
your back, whether it's, and that you
don't have someone there to assist you.

907
00:55:52,470 --> 00:55:55,940
So I think that's the important
thing, who's in the household, who's

908
00:55:55,940 --> 00:55:57,640
there to help you and care for you.

909
00:55:57,640 --> 00:56:01,800
So if you, If you can't hang out
washing yourself, but your partner can,

910
00:56:02,420 --> 00:56:03,970
then you get your partner to do that.

911
00:56:03,970 --> 00:56:06,610
You wouldn't necessarily get
home help to come in and do that.

912
00:56:07,080 --> 00:56:08,520
So it's about what are the gaps.

913
00:56:09,195 --> 00:56:13,065
in your household about what you need
for support to remain in your own home.

914
00:56:13,075 --> 00:56:17,335
Because the, the purpose of My Aged Care
is to enable people to remain in their

915
00:56:17,335 --> 00:56:20,095
own home, um, and have quality of life.

916
00:56:20,545 --> 00:56:22,745
So it's really fulfilling
where that gap is.

917
00:56:22,755 --> 00:56:28,145
So as you're finding that your
functional ability is changing, then

918
00:56:28,145 --> 00:56:31,595
that's when you need to start thinking
about what sort of support you need.

919
00:56:32,095 --> 00:56:36,145
Interestingly, you know, anecdotally
what we hear is that most older

920
00:56:36,145 --> 00:56:37,815
people don't tap into it to look.

921
00:56:38,315 --> 00:56:43,505
It really becomes a major issue for
them, you know, and so people are

922
00:56:43,505 --> 00:56:45,675
not abusing or overusing the system.

923
00:56:46,245 --> 00:56:49,675
That's what we hear, that people are
really just tapping in as they, they've

924
00:56:49,675 --> 00:56:52,485
probably already needed it for a
while, but they've got to that point.

925
00:56:52,835 --> 00:56:54,925
Because if you think about it, you're
allowing people into your home.

926
00:56:56,125 --> 00:56:59,745
That you don't really know, that you
will eventually hopefully develop

927
00:56:59,745 --> 00:57:03,455
a relationship with, you know,
they'll become, you'll have a regular

928
00:57:03,485 --> 00:57:06,145
cleaner or a regular personal care
worker or whatever it is, rather

929
00:57:06,145 --> 00:57:08,715
than a rotating staff all the time.

930
00:57:09,055 --> 00:57:12,835
It's a big thing to allow other
people into your home to do things

931
00:57:12,845 --> 00:57:16,415
that you know are to help you
with a level of independence.

932
00:57:16,725 --> 00:57:19,825
But most people want to maintain their
own independence as much as possible.

933
00:57:21,125 --> 00:57:22,365
Catherine: It is a big step, isn't it?

934
00:57:22,365 --> 00:57:26,875
Because it is actually admitting that
you need someone to, to actually help.

935
00:57:26,895 --> 00:57:31,455
And like you said, it's a very
private personal space that perhaps

936
00:57:31,465 --> 00:57:35,005
someone else has never been into,
except for perhaps, you know, your,

937
00:57:35,255 --> 00:57:39,075
your loved one who may have already
passed and you're by yourself.

938
00:57:39,645 --> 00:57:42,675
So it is a quite a vulnerable
thing to go through.

939
00:57:43,025 --> 00:57:46,545
So thanks for, thanks for
clarifying that point, Camilla.

940
00:57:46,545 --> 00:57:47,525
I really appreciate it.

941
00:57:48,280 --> 00:57:53,140
Is there anything else that you feel
that you'd like to share or perhaps

942
00:57:53,220 --> 00:57:59,190
provide advice on anyone who is
either in palliative care or caring

943
00:57:59,190 --> 00:58:02,780
for someone with a life limiting
illness regardless of what age?

944
00:58:03,430 --> 00:58:06,210
Camilla: We haven't really touched a
lot on the carers except to say about

945
00:58:06,590 --> 00:58:09,860
the level of responsibility and the
level of care that might be needed.

946
00:58:11,180 --> 00:58:14,910
I think when you have someone, if you're a
carer and you have someone in your family

947
00:58:14,910 --> 00:58:19,990
who's been diagnosed, to have really
frank discussions with the specialist or

948
00:58:20,040 --> 00:58:26,285
the GP about, The level of care that's
required, and think about whether you and

949
00:58:26,285 --> 00:58:30,985
your family or your friends can actually
provide the level that's required, is

950
00:58:30,995 --> 00:58:32,765
something to really be thought through.

951
00:58:33,275 --> 00:58:37,245
Because you'll often hear people say,
Oh, I want to die at home and I want

952
00:58:37,245 --> 00:58:38,825
all my care to be provided at home.

953
00:58:39,135 --> 00:58:42,175
And yes, my family will do that, but they
haven't actually talked that through.

954
00:58:42,605 --> 00:58:46,615
And it's aspirational, I think,
for people to want to die at home

955
00:58:46,615 --> 00:58:51,165
at the moment, because we hear
that there's often not enough.

956
00:58:51,570 --> 00:58:55,650
in home care, unless you've got a, uh,
a group of people helping you and from

957
00:58:55,650 --> 00:58:59,740
within your family or your friends,
there isn't often, or they take time

958
00:58:59,740 --> 00:59:04,280
out from work, there often isn't enough
support for people to die at home.

959
00:59:04,280 --> 00:59:07,020
And although they might say, my
advanced care plan is I want to die

960
00:59:07,030 --> 00:59:09,990
at home, they haven't necessarily
done all that planning and that

961
00:59:09,990 --> 00:59:13,130
discussion with people around them to
make sure that's a practical reality.

962
00:59:13,680 --> 00:59:16,740
So in fact, we do have a lot of
people who end up dying in hospitals.

963
00:59:17,380 --> 00:59:20,500
And the last thing you really want
to do is die in an ambulance, either.

964
00:59:21,210 --> 00:59:24,780
And you know, all that ambulance ramping
that we've often heard about is not

965
00:59:24,780 --> 00:59:28,920
necessarily, wasn't necessarily people
with COVID, it was people who were older

966
00:59:28,990 --> 00:59:34,280
people that were becoming symptomatic and
being transferred to hospital, calling

967
00:59:34,280 --> 00:59:37,780
ambulances and either being transferred
by aged care facilities or being

968
00:59:37,790 --> 00:59:40,160
transferred from one of their carers.

969
00:59:40,750 --> 00:59:43,530
not cope with the symptoms
that were happening.

970
00:59:43,530 --> 00:59:49,190
So really, our goal is to say, really
plan ahead and think about what's going

971
00:59:49,190 --> 00:59:51,190
to work for you and your situation.

972
00:59:52,385 --> 00:59:56,565
Catherine: And Camilla, would it be
right in saying also, not just about how

973
00:59:56,605 --> 01:00:02,745
the illness will possibly provide them
with symptoms and deteriorate perhaps

974
01:00:02,745 --> 01:00:08,275
their, their actions, but also should
they be having very frank discussions

975
01:00:08,275 --> 01:00:11,455
about the impact of the medication.

976
01:00:11,695 --> 01:00:17,745
That people are on and how sometimes that
can change behavior as well and short

977
01:00:17,745 --> 01:00:19,695
term memory loss and things like that.

978
01:00:19,995 --> 01:00:23,205
So would that be fair to say that they
should have those discussions as well?

979
01:00:23,925 --> 01:00:24,785
Camilla: Absolutely.

980
01:00:24,795 --> 01:00:28,125
So one of the things that can
happen, and it's an absolute furphy

981
01:00:28,135 --> 01:00:31,495
that people who are palliative will
become addicted to their pain meds.

982
01:00:31,495 --> 01:00:31,675
Okay.

983
01:00:31,675 --> 01:00:32,685
That's an absolute furphy.

984
01:00:32,715 --> 01:00:34,405
So I can bust that myth straight away.

985
01:00:34,965 --> 01:00:38,585
You know, the body will take in what it
needs and expels what it doesn't need

986
01:00:38,875 --> 01:00:40,375
in particularly when you're palliative.

987
01:00:40,745 --> 01:00:41,755
So, you know.

988
01:00:42,055 --> 01:00:45,295
There's enormous amount of training
that goes into doctors and nurses

989
01:00:45,295 --> 01:00:48,685
about titrations and levels of
medications at different points.

990
01:00:48,705 --> 01:00:52,975
So the public can be rest assured
that all the medications that they'll

991
01:00:53,005 --> 01:00:55,515
be trying out and using, because
different, different strikes for

992
01:00:55,515 --> 01:01:00,135
different folks, is very carefully Uh,
implemented, but they do need to be

993
01:01:00,135 --> 01:01:04,525
aware that with some illnesses, they may
actually impact on brain functioning.

994
01:01:05,225 --> 01:01:07,875
Uh, they may get impact on
other functioning of other

995
01:01:07,875 --> 01:01:09,445
limbs and parts of the body.

996
01:01:09,965 --> 01:01:14,875
Some medications may cause,
uh, digestive system issues.

997
01:01:14,965 --> 01:01:17,635
And so, you know, there are
the side effects as well.

998
01:01:17,635 --> 01:01:19,635
For some people, some people
have no side effects, but some

999
01:01:19,635 --> 01:01:20,515
people have fight side effects.

1000
01:01:20,860 --> 01:01:22,480
like constipation or the opposite.

1001
01:01:22,850 --> 01:01:24,950
But to talk all that
through and understand.

1002
01:01:25,380 --> 01:01:27,890
But remembering it's not a
linear journey necessarily.

1003
01:01:27,930 --> 01:01:31,760
People can come, you know, many, many
years ago in palliative care, people were

1004
01:01:31,760 --> 01:01:36,040
diagnosed and if they couldn't be cured,
then they went on this downhill slide.

1005
01:01:36,080 --> 01:01:38,069
Now we know that people go
up and down and up and down.

1006
01:01:38,150 --> 01:01:41,630
and down and they might have periods of
months where they feel really fantastic

1007
01:01:41,940 --> 01:01:44,580
and they might have a period of time
then where they don't feel great.

1008
01:01:44,940 --> 01:01:49,270
So it's not like you go automatically
from stable to unstable to deteriorating

1009
01:01:49,270 --> 01:01:51,870
to terminal, which is sort of
the four phases we talk about.

1010
01:01:52,360 --> 01:01:55,330
They might go up and down through all
those phases and it's really only that

1011
01:01:55,330 --> 01:01:59,160
terminal phase that's likely to be set,
which is that last sort of week of life.

1012
01:01:59,960 --> 01:02:03,340
I guess the other thing is that when
people are in that last week of life,

1013
01:02:03,880 --> 01:02:08,260
hearing from clinicians about what's
going to happen is really important

1014
01:02:08,630 --> 01:02:10,800
because people's breathing changes.

1015
01:02:11,060 --> 01:02:14,920
They may not want to eat in the last few
weeks of life, but hydration might be

1016
01:02:14,920 --> 01:02:18,880
important, but not eating food will be
important, you know, won't be a problem.

1017
01:02:19,470 --> 01:02:21,100
Their ability to concentrate.

1018
01:02:21,490 --> 01:02:23,300
It's not necessarily the medication.

1019
01:02:23,660 --> 01:02:28,010
So as your body deteriorates, your
brain function also deteriorates.

1020
01:02:28,520 --> 01:02:30,960
But yet we know through research
that hearing is often one

1021
01:02:30,960 --> 01:02:32,290
of the last faculties to go.

1022
01:02:32,780 --> 01:02:35,630
So if someone appears unconscious,
or they're semi conscious, you

1023
01:02:35,630 --> 01:02:36,990
can still sit and talk to them.

1024
01:02:37,130 --> 01:02:38,360
Because they can still hear you.

1025
01:02:39,100 --> 01:02:42,360
So, you know, all those sorts
of things are really important.

1026
01:02:42,370 --> 01:02:47,520
So for people to ask those questions
of their medical professionals and,

1027
01:02:47,830 --> 01:02:52,280
and hear how, in fact, it might be,
so they don't go into this unknown

1028
01:02:52,350 --> 01:02:56,930
panic right at the end, when they see
certain things happening, that it can

1029
01:02:56,930 --> 01:02:59,500
be a really peaceful, comfortable.

1030
01:02:59,860 --> 01:03:00,680
End of life.

1031
01:03:01,540 --> 01:03:05,200
And that's really the part, one of the
major aims of palliative care is not

1032
01:03:05,200 --> 01:03:09,480
just quality of life that you live until
you die, but that that dying phase is

1033
01:03:09,480 --> 01:03:11,730
actually a really comfortable phase.

1034
01:03:13,090 --> 01:03:17,400
Catherine: Now, Camilla, I know you have a
huge amount of resources on your website.

1035
01:03:17,760 --> 01:03:22,900
Is there anything that we haven't
mentioned that is of top of mind for you

1036
01:03:23,410 --> 01:03:25,050
in the discussions that we've been having?

1037
01:03:25,500 --> 01:03:28,010
Camilla: Yeah, look, I think there's
an enormous amount of resources on our

1038
01:03:28,010 --> 01:03:31,760
website and on our members web which
are all peak bodies in palliative

1039
01:03:31,820 --> 01:03:36,070
care and look at those and read those.

1040
01:03:36,110 --> 01:03:39,690
But I, I think it's always good to
have conversations with people as well

1041
01:03:39,690 --> 01:03:44,190
who've got expertise and experience and
talk through your particular situation.

1042
01:03:44,690 --> 01:03:49,300
Resources and tools are being updated
all the time, uh, so that, you know,

1043
01:03:49,300 --> 01:03:52,900
you can be rest assured that most things
that you will find will be up to date.

1044
01:03:53,470 --> 01:03:56,390
So yeah, look, definitely have
a look, search for things if

1045
01:03:56,390 --> 01:03:58,100
you can't find them, call.

1046
01:03:59,740 --> 01:04:00,490
Catherine: Fantastic.

1047
01:04:01,180 --> 01:04:04,080
Um, is there anything else you'd
like to add at all, Camilla?

1048
01:04:05,270 --> 01:04:05,280
Uh,

1049
01:04:06,520 --> 01:04:08,890
Camilla: I think we've touched
on most things and thank you

1050
01:04:08,890 --> 01:04:10,250
for the opportunity, Catherine.

1051
01:04:10,290 --> 01:04:14,010
It's, it's good to be able to
talk about, you know, those, those

1052
01:04:14,040 --> 01:04:17,690
questions that people often don't want
to discuss and, and do it in a way

1053
01:04:17,690 --> 01:04:19,950
that's going to be helpful, I hope.

1054
01:04:20,950 --> 01:04:22,490
Catherine: Thank you so
much for your time, Camilla.

1055
01:04:23,295 --> 01:04:24,005
Camilla: That's a pleasure.

1056
01:04:24,275 --> 01:04:24,695
Thanks, Catherine.

1057
01:04:26,785 --> 01:04:30,205
Catherine: We hope you enjoyed today's
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1058
01:04:30,525 --> 01:04:32,105
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1059
01:04:33,045 --> 01:04:37,305
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1060
01:04:37,305 --> 01:04:39,155
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1061
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1062
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1063
01:04:44,910 --> 01:04:49,050
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01:04:49,050 --> 01:04:50,790
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1066
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1067
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