- My name is Kamal
and I'm from the Bhutanese community.
I came to Australia in 2008 as a refugee
originally from Bhutan.
So in terms of my community involvement
I have been involved in different community activities.
I have been helping to come meet
Bhutanese community members
in varieties of areas, as a chairperson
of the Bhutanese Australia
Association of South Australia,
and at the moment I am serving
as a general secretary of the association.
The community itself is very important for us.
We have around like 4,500
around 4,500
settled in South Australia.
We help each other and connect with each other
in terms of any activities we do, support each other.
So the community in the sense
is very important to us.
So this topic, the palliative care topic
is quite interesting.
It is very important in terms of community perspective
because the palliative care
is totally new for our community
because you're experiencing about palliative care
in Australia is very different
than that of what we used to have previously
in Bhutan or in the refugee camp.
So understanding about palliative care is very important
and the services that are available during the time
of palliative care is also important
for the community to know about it.
So this has helped me to provide some sort of information
to the community about palliative care.
- So Kamal really thanks for coming.
And we're really excited.
We're hoping that you'll help us understand
how we might use what I'll show you
our project looking at BRILLIANT
at the end of life, into your community.
And it's a area that every culture and every community
has many barriers and things that we should respect
in how we talk about these things.
- Yeah.
- And so we've been looking at in the Australian community
in the Lyell McEwin, and we've looked at what this means
within our palliative care team here in NALHN
in the Northern Adelaide Local Health Network, what we've
what we're seeing in the acute hospital.
And now we're hoping to understand what will happen
in the Bhutanese, the Afghani and the Syrian communities.
And that's why we talk to you
and trying to learn what we're really seeing.
And then interpreting that to give power
to the people who are probably the most vulnerable
to the patients
to the people who feel even threatened by health systems.
And by certainly I think we all feel threatened when
we think about death or an approaching end of life.
I've got a bit of film to show you about what been doing.
So it gives you some idea
of what it's like for these people.
And this is an interaction on the ward where
two nurses need to go in and give him some pain relief.
And there's a whole lot
of process tick boxes that they need to do, two of them,
checking it off, checking who he is.
But I think this shows how they can do it
but make it not a sterile unfriendly thing.
- I've got some pain relief for you, love.
Just got some more syrup for you
before you have a shower. - Aw this is the one is it?
- It is.
- So just check off, so you tell us
- 14/9/1945
- 071413
- That's the one
- Any allergies to anything Archie?
Have you got a list?
- Eh, I don't know what they are,
really don't, its only since the last two weeks.
- Morphine, nurses?
- Are you allergic to morphine?
- No they said he's not
- They say its not, to try this morphine syrup
- Yep, so it will help with your breathing
- The doctor said that's what you're talking about
- It takes the struggle away,
the work work of breathing, all right?
Gets your body relaxed.
Into the side of your cheek so it doesn't
go down the back of your throat and choke you.
Have you got a chaser?
You might want a mouthful of water after that.
- Chaser sounds like an
alcohol drink, doesn't it?
- Some people like that
and some people think it's rubbish.
- Tastes like how shit smells.
- I'll put some in the syringe just to
get that last drop out.
Here's some water.
- Sorry about that.
- Now we have started with a
low dose for you Archie,
so please let us know
whether that has helped with your breathing
- I'm going straight in the shower
after we're done here as well.
- Yes, so let us know and also because
you're not allergic and it is on your list
just let us know if you start getting any itching
anywhere or come out in a rash anywhere
- He was just hallucinating.
He thought there were spiders everywhere
- Right, so you might get hallucinations
so let us know if you starting to get any
of those visual effects as well, okay?
- If you see any numbers on the wall, mainly
6 as well, write them down and flick them
off to me all right?
- Amy's been chasing them for months.
- All right, thank you Archie!
- Thanks a lot!
- So typical daily practice in the acute hospital
but it was very friendly, wasn't it?
They made a really safe place.
How did they do it?
Well, Kathy thought they were confident
but they use humor, banter, simple language.
They explained what they were doing.
And this family asked
that we use this vignette to show
medical students and nursing students
so they could understand what they need to do
but how they can do it in a friendly way.
What we're hoping is that you could tell us a bit
about what you think might be important
how we could get a similar message
or what the message should be to your community.
So in Bhutan,
how is death managed?
Is it spoken of how would it normally
be managed in the community there?
- So as you know, like most of the people,
they pretty much they would desire to die
at home instead of dying in the hospital.
So there's one of the, one
of the key points that I wanted to highlight.
- So the family would provide care.
Would there be any nurses or any doctors at all?
- So family would provide care at their home.
Like if they have to take to the hospital
the nurses and the doctors obviously will provide them care.
But at the same time
family members would be always there to take care
of the personal hospital in the hospital as well.
People often they don't like to talk about dying.
Like they don't hear
they don't want to hear the word dying.
So, but like being in 21st century
obviously we need to understand what is palliative care
and what are the process that involves when caring
with people we use priest, like maybe if he's a Christian
the Christian come like the father comes and just do some
do the prayer or something like that.
And also in, in terms of Buddhists, they
the Buddhist monk come and do, do the prayer with a
a dying person is it might be in the hospital.
It might be in a, at home.
It is positive
for us to practice those cultural practices when
you were away from our Homeland.
- So that's a really important thing because
in the first video, the fellow was actually
saying how good it was to have his own space
to have his own room, which would then allow family
and other community members to, to participate
in the care of that person or to be there.
Yeah. So that's probably a really important point.
- So that's, that's definitely what happens like at the time
like most of the community, like the relatives
or the other community members, they wanted to come and talk
to the person who is dying and just wanted to say goodbye.
Those things is still is still, is not new in the community
but that has been practicing, like has been for a long time.
- And so are there things that have not gone well
at end of life, in your community that might help us
understand where we could do better?
- I think there is a gap
between caring at home and in the hospital.
So they prefer, they prefer
to be cared at home
but like the alternative way is been,
you know, the hospital environment
hospital caring environment was be more preferable.
- Yeah. So what are the languages we should use?
We talking in English obviously
but is that a dominant language in your community?
- So we might be using a Nepali language, which is most
most of the people, they understand the language
Nepali language, which
It is always for people who are like origin reason.
They don't, they don't have English.
And the Nepalese, the first language.
So Nepalese language would be preferable.
- It sounds to me like there's a whole lot
of work we need to do about letting the community know
about what services there are, who can come to the house.
- We also struggle, like, because we need to borrow words
from other languages as well.
We also struggle to get the right word for that.
So definitely that would be working point to
get the appropriate word in Nepalese language as well.
- Hmm, good.
So we thought
that we'd asked you to find some members in your community.
- I've been looking forward to this
talk to them.
- So they might be able to talk
about what their experience was to the community.
And hopefully there's some
Education and good things for your community
but also back for us as well.
So we can do even better.
- Do it better, yeah.
- Welcome everyone.
Thank you for coming in.
So this morning we'll be discussing about palliative care
within the Bhutanese community and a bit of understanding
about palliative care
in a cultural way in a religious or
in a community perspective, the floor is open
so we can discuss about what is palliative care
and what is the understanding
about the palliative care within our community
- In Bhutan, because in the,
like our elderly like whether they are sick
or they are aged, when they are taken to hospital
in the last days, I suppose, is that you take them home
but here they are from medical ward, there was a
so this has to take her or him to palliative care.
So it's still, it's still care is going on
from the government side or the hospitals.
They just take care of them up until the last breath
but in Bhutan and we, when the hospital
or medical ward says that no more, we can just give.
Then, then they will ask to bring back home.
- Yep. So you mentioned that you,
you care for your mum for 18, like 17 months.
So what are the resources that you got
from, from the palliative care system
- To care for your mum, your mum
- My mum, she was wanting to go home
because I want to die,
if I have to die, I'll die at home.
So finally we discussed the matter
with palliative care and they just supported us at home.
So we don't want to even just bought our mum home
the palliative care, maybe in alternating days
or the daily, they were just coming to look after my mum.
So it was very, very, very helpful.
- The palliative care topic, is, is a sensitive topic for
for most of the Bhutanese community
like in the community who is going to die,
like, in few hours
a few days, a few months don't want to talk
really don't want to talk about it.
So, which is very sensitive.
Like, you know, it, it adds, you know
the distress trauma anxiety to
to him or herself,
and also like, and also to the family.
So a family member.
So this is a very sensitive topic.
There are a lot of topics that that can be discussed
but this one is, this topic looks like sensitive.
- I think we have to say indirectly that suppose
suppose if somebody is going to die
if we know that we can say something like
what will be your last week, something like that
or that you're going to die or something like that.
We have to, we have to tell him indirectly
so that if he accepted, we can.
- So I think like in our culture,
death is not accepted as a natural process.
It's like to me as well.
Like if someone, like, if someone says I'm dying, it will be
like a failure on my part, because there are so
many things that has to be achieved, which I haven't done.
And then feel like death is considered
like totally unacceptable.
We don't talk about it.
Like we discuss about other things like marriage about
birth, we don't celebrate it.
It's like completely different.
We all fear death.
It's not open at all.
No one talks about it
- As I think you might have heard, like one
of the participants spoke about
she was scared going like near
to a person who is dying.
So there's, that's sort of like in a stigma there sort of
you know, the anxiety or there's a lot of fear that comes in
when we discuss about this, this topic
- At the end of the life
people want to die on the lap of the family.
The service providers should know about the decision of the
of the person what's he or she want.
And try to understand the judge of the family members.
- Actually, I learned a lot
of things we all discussing because there are, you know
the difference difference between, you know
the caring parents and then, you know
totally someone who is unknown about the palliative care.
So almost all things that we discuss has been
like an important topic to be takeaway.
Because as I mentioned before
palliative care is totally new to our community.
We have been here only 10 years
but communication not being delivered properly
because of the language barrier.
So all the materials published has been in English.
So there are nothing written in the Nepali language.
So this is also one of the, you know, barrier
that the community members not being able to
identify what services are available and what area
of the service is available in which I like which places.
And mostly like, you know, most of the people believes
that there are no choice, no control, but there are actually
there are choice in control in taking services
either like in the hospital or at caring at home.