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AMANDA WHITEHOUSE: So the advance care plan
is a document, a tool, that enables
people to think about what they want at the end of life.
It offers questions, triggers, and conversations
for people to discuss with others
that are important to them and then
to document what they want.
So the advance care plan can make a real difference.
It can promote independence and control
throughout someone's disease process
from the beginning right through to the end.
And it enables that person to have control of what, where,
and how they want their treatments and their care.
KERRY THOMPSON: I do a muscle meeting
through Muscular Dystrophy probably every three months.
And it was in one of those meetings
that Anna brought up the care plan.
And it definitely was something that I was interested in just
because it takes that pressure off of my husband
that if I do end up in hospital and I can't verbally
say what I want, instead of my husband worrying about
whether or not I'm going to wake up and go what have you done
or him having to make a difficult decision that he
can't do, it's there.
It's all on paper for me to say this is my wishes
and this is what I want.
LISA RODRIGUEZ: Well, I'm 50 years old now, finally.
And I've got corticobasal degeneration.
And the lifespan of that is about six years, maybe seven.
Depends what internet site you look at.
So at the end I won't be able to do a lot for myself.
I won't be able to feed myself, I
won't be able to dress myself or anything at all.
So while I've got the ability, having an advance care
plan means that I can have my say
and it's not someone else saying--
this disease is doing everything to me
and I want the control at the end.
I want to be able to have it my way.
CLAIRE WELLS: So back in 2008, mum
started having a numb toe in her left foot
and put it down to some new heels that she just thought
were too tight.
And then after a few days and weeks, it still was there
and the numbness was kind of creeping up very, very slowly
through her foot and her ankle.
But yes, I think we probably waited
about three or four months for the neurologist appointment.
But he sort of stared his screen for a good long time
and it was just quite quiet.
And then he said, it's corticobasal degeneration.
I think to be honest, because of the-- the more
we learned about the condition, the more it really
was a necessity to be writing some of these requirements
down.
You know, it's putting your wishes into place
and actually it's making it easier
for your family as well so that they don't have to make
those difficult decisions.
Because if you don't have those conversations, you're not--
you almost live in guilt because you don't know, well,
did they want to be resuscitated?
So if you know, then you've got it recorded down.
It's signed while someone's got cognition
as well, because she's lost her cognition now.
So at least she was able to get it recorded.
AMANDA WHITEHOUSE: So the advance
care plan is your voice, is your thoughts on paper.
And by bringing it into the hospital or using it at home,
any clinician can read through this with you
or with your loved ones and identify all of the decisions
that you've made along your disease pathway.
So the questions are very serious, quite intimate,
and quite sensitive.
They will ask about treatment escalation.
If you were offered antibiotics to reverse an infection,
would you want to have that in hospital or at home?
If your heart stopped, would you want to be resuscitated?
We call that do not resuscitate.
If you wanted to donate your organs,
it talks about organ donation and specifically
what organs you would want to donate.
KERRY THOMPSON: I keep mine in a folder in a drawer
and there are key people that know where it is.
It comes with me if I go to hospital.
The paramedics are told if they come in the house
that I have this booklet.
So everything is pretty much in a little plastic folder that
has things medically for me.
There's everything in there that you need.
There's everything in there from what
you want as flowers, to who you want to know,
to your social media, to who you want
to give what to, to what medical you do want
and what you don't want.
Everything's in there and very clear.
That you don't have to fill it all out if you don't want to.
You can fill it out as you gradually go on
or you can leave it blank.
It's entirely up to you.
LISA RODRIGUEZ: It's your plan.
It's a working document.
So you can cross through it and do
whatever you need to do because it is your document.
And it's about that person feeling
comfortable in having their say and saying what they want.
AMANDA WHITEHOUSE: Any time is a good time
to complete your advance care plan.
However, when we're living with something
that we know we're not going to get cured from, that we know
is degenerative, and there is a possibility
that we are going to deteriorate with this disease, that's
a really good time to complete your advanced care plan.
So anyone can do an advance care planning.
There is criteria that you need to be over 18.
So it's any adult with full capacity, full ability
to make decisions and weigh up the risks with those decisions.
JENNIFER BOLLEN: After seeing what
has been happening with Claire and her mum,
it definitely makes me far more aware
of how limited you are in your options
if you haven't thought about this well in advance.
There is no way 10 years ago we'd have
been talking about this stuff.
There's no way we'd have thought that this would
happen in our lives to people we knew, let alone
to the one of us.
And I think people need to think about this stuff
while they are healthy enough in their mind, in particular,
to set in stone what their wishes are.
It's not just a piece of paper.
It's life changing.
Massively, massively life changing.
And for not very much effort at all.
And for something that you can--
yeah, it's an organic document--
for something that you can keep updating as your circumstances
change and as your perspectives change
when you get a bit older.
Things that you change your mind about,
for not very much effort, you can utterly
change an outcome when you're your most vulnerable.
AMANDA WHITEHOUSE: So the process
for filling in the advance care plan is to get the document.
So from your local GP or your local hospital or hospice
you'll be able to get the document.
You can also download documents from many websites
if you search that.
And the next step is to think about those questions
and to write it down.
And then it's about putting it in a place that is safe
and alerting everyone where that safe place is,
making sure it's accessible.
So if a paramedic were to visit your home
and you are unable to state what it is that you wanted
or whether you wanted to be admitted to hospital,
he or she would be able to read your advance care plan
and make those decisions on your behalf.
KERRY THOMPSON: So it was a good conversation.
It wasn't a hard conversation to have.
It wasn't a conversation where I'd go, oh my goodness, what
am I going to do.
I've never thought about this.
It was definitely a conversation of oh, OK,
I haven't thought about that before but now I am and it
is a good thing to think about.
As much as it's about talking death,
it's not as much talking death as it is
of keeping your independence.
It is a booklet of independence and that's
what they need to see it as, is that these are your choices.
These are the choices that you can make and change
as the years go on.
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