Lets talk about dying Peter Saul
look I had second thoughts really about
whether I could talked about this to
such a vital and alive audience as you
guys but then I remember the quote from
Gloria Steinem which goes the truth will
set you free but first it will piss you
off so so with that in mind I’m going to
set about trying to do those things here
and talk about dying in the 21st century
now the first thing that will piss you
off undoubtedly is that all of us are in
fact going to die in the 21st century
there will be no exceptions to that
there are apparently about one in eight
of you who think you’re immortal what’s
on surveys but unfortunately that
doesn’t this isn’t going to happen while
I give this talk in the next ten minutes
a hundred million of my cells will die
and over the course of today two
thousand of my brain cells will die and
never come back so you could argue that
the dying process starts pretty early in
the piece anyway the second thing I want
to say about dying in the 21st century
poem is going to happen to everybody is
it’s shaping up to be a bit of a train
wreck for most of us unless we do
something to try and reclaim this
process from the rather an exabyte
reject area that is currently on so
there you go that’s the truth no doubt
that will piss you off and now let’s see
whether we can set you free I don’t
promise anything now as you heard in the
intro of care and I think I’ve kind of
lived through the heyday of intensive
care there’s been a ride man this has
been fantastic we have machines that go
ping there’s many of them up there and
we have some wizard technology which I
think has worked really well and over
the course of the time I’ve worked an
intensive care the death rate for males
in Australia has halved and intensive
care has had something to do with that
certainly a lot of the technologies that
we use have got something to do with
that so we have had tremendous success
and we we kind of got caught up in our
own success quite a bit we started using
expressions like life-saving I really
apologize for everybody for doing that
because obviously we don’t what we do is
prolong people’s lives and delay death
and redirect death but we
we can’t strictly speaking save lives in
any sort of permanent basis and what’s
really happened over the period of time
that I’ve been working in intensive care
is that the people whose lives we
started saving back in the 70s 80s and
90s are now coming to die in the 21st
century of diseases that we no longer
have the answers to in quite the way we
did then so what’s happening now is
there’s been a big shift in the way that
people die and most of what they’re
dying off now isn’t as amenable to what
we can do as what it used to be like
when I was doing this in the 80s and 90s
so we kind of we kind of got a bit
caught up with this and we haven’t
really squared with you guys about
what’s really happening now and it’s
about time we did I kind of woke up to
this bit in the late 90s when I met this
guy this guy is called Jim Jim Smith and
he looked like this I was called down to
the ward to see him his is the little
hand I was called down the world to see
him by a respiratory physician he said
look there’s a guy down here he’s got
pneumonia and he looks like he needs
intensive care his daughters here and
she wants everything possible to be done
which is a familiar phrase to to us so I
go down to the warden see Jim and his
skin is translucent like this you can
see his bones through the skin it’s very
very thin and he is indeed very very
sick with pneumonia and he’s too sick to
talk to me so I talked to his daughter
Kathleen and I say to her did you and
Jim ever talk about what you would want
done if he ended up in this kind of
situation and she looked at me she said
no of course not I thought okay take
this steady and I got talking to her and
after a while she said to me you know we
always thought there’d be time Jim was
94
and I realized that something wasn’t
happening here there wasn’t this
dialogue going on that I imagined was
happening so a group of had started
doing survey work and we looked at four
and a half thousand nursing home
residents in New Castle in the Newcastle
area and discovered that only one in a
hundred of them had a plan about what to
do when their heart stopped beating one
in a hundred and any one in five hundred
of them had a plan about what to do if
they became seriously ill I realized of
course this dialogue is Jeff definitely
not occurring in the public at large my
work in acute care this is John Hunter
Hospital and I thought surely we we do
better than that
so a colleague of mine from nursing
called Lisa Shore and I went through
hundreds and hundreds of sets of notes
in their medical records department
looking at whether there was any sign at
all that anybody had Hany had any
conversation about what might happen to
them if the treatment they were
receiving was unsuccessful to the point
that they would die and we didn’t find a
single record of any preference about
goals treatments or outcomes from any of
the sets of notes initiated by a doctor
or by a patient so we started to realize
that we had a problem and the problem is
more serious because of this what we
know is that obviously we are all going
to die but how we die is actually really
important obviously not just to us but
also to how that features in the lives
of all the people who live on afterwards
how we die lives on in the minds of
everybody who survives us and the stress
created in families by dying is enormous
and you in fact you get seven times as
much stress by dying in intensive care
as by dying just about anywhere else so
dying in intensive care is not your top
option if if you’ve got a choice and if
that wasn’t bad enough of course all of
this is rapidly progressing towards the
fact that many of you in fact about one
in ten of you at this point will die in
intensive care in the u.s. it’s one in
five in Miami it’s three out of five
people die in intensive care so this is
the sort of momentum that we’ve got at
the moment
the reason why this is all happening is
due to this and I do have to take you
through what this is about these are the
four ways to go so one of these will
happen to all of us the ones you may
know most about are the ones that are
becoming increasingly of historical
interest southern death it’s quite
likely in an audience this size this
won’t happen to anybody here
sudden death has become very rare the
death of Little Nell and Cordelia and
all that sort of stuff just doesn’t
happen anymore
the dying process of those with terminal
illness that we’ve just seen occurs to
younger people by the time you’ve
reached 80 this is unlikely to happen to
you only 1 in 10 people who are over 80
will die of cancer the big growth
industry of these what you die of is
increasing organ failure with your
respiratory cardiac renal whatever
organs packing up each of these would be
an admission to an acute care hospital
at the end of which or at some point
during which somebody says enough is
enough and we stop and this one’s the
biggest growth industry of all and at
least six out of ten of the people in
this room will die this form which is
the dwindling of capacity with
increasing frailty and frailty is an
inevitable part of Aging and increasing
frailty is in fact the main thing that
people die of now and the last few years
or last year of your life is spent with
a great deal of disability unfortunately
enjoying it so far
so I just feel such a I feel such a
Cassandra here what can I say this
positive was positive is that this is
happening at very great age now we are
we are all most of us living to reach
this point you know historically we
didn’t do that this is what happens to
you when you live to be a great age
and unfortunately increasing longevity
does mean more old age not more youth
and I’m sorry to say that what we did
anyway look what we did we didn’t just
take this lying down at John Hunter
Hospital and elsewhere we’ve started a
whole series of projects to try and look
about whether we could in fact involve
people much more in the way that in the
way that things happen to them but we
realize of course that we are dealing
with cultural issues and this is I love
this Klimt painting because if you the
more you look at it the more you kind of
get the whole issue that’s going on here
which is clearly the death the
separation of death from the living and
the fear like if you actually look
there’s one woman there who has her eyes
open she’s the one he’s looking at and
he’s the one he’s coming for can you see
that she looks terrifying so amazing
picture anyway we had a major cultural
issue clearly people didn’t want us to
talk about death all we thought that so
with loads of funding from the federal
government and the local Health Service
we introduced the thing that John Hunter
called respecting patient choices we
trained hundreds of people to go to the
wards and talk to people about the fact
that they would die and what would they
prefer under those circumstances they
loved it the families and the patients
they loved it 998 percent of people
really thought this just should be
normal practice and this is how things
should work and when they expressed
wishes all of those wishes came true as
it were we were able to make that happen
for them but then when the funding ran
out we went back to look six months
later and everybody had stopped again
and nobody was having these
conversations anymore so that was really
kind of heartbreaking for us because we
thought this was going to really take
off the cultural issue had reasserted
itself so here’s the pitch I think it’s
important that we don’t just get on this
freeway - I see you without thinking
hard about whether or not
that’s where we’re all want to end up
particularly as become older and
increasingly frail and ICU has less and
less and less to offer us there has to
be a little side road off there for
people who don’t want to go on that
track and I have one small idea and one
big idea about what could happen and
this is a small idea the small idea is
let’s all of us engage with more with
this in the way that Jason is
Illustrated
why can’t we have these kinds of
conversations with our own elders and
people who might be approaching this
there are a couple of things you can do
one of them is you can just ask this
simple question this this question never
fails in the event that you became too
sick to speak for yourself who would you
like to speak for you that’s a really
important question to ask people because
giving people the control over who that
is produces an amazing outcome the
second thing you can say is have you
spoken to that person about the things
that are important to you so that we can
got a better idea of what it is we can
do so that’s a little idea the big idea
I think is more political I think we
have to get on to this I suggested we
should have occupied death my wife said
I sit over here right sittings in the
mortuary yeah oh sure so that one didn’t
really run but I did I was very struck
by this now I’m an aging hippies I don’t
know I don’t think I look like that
anymore but I had to - my kids were born
at home in the 80s when home birth was a
big thing and then we baby boomers are
used to taking charge of the situation
so if you just replace all these all
these words of birth I like peace love
natural death as an option I do think we
have to get political and start to
reclaim this process from the
medicalised model in which it’s going
now listen that sounds like a pitch for
euthanasia I want to make it absolutely
crystal clear to you all I hate
euthanasia I think it’s a sideshow I
don’t think euthanasia matters I
actually think that that in countries in
places like Oregon where you can have
physician assisted suicide you take a
poisonous dose of stuff only half a
percent of people ever do that I’m more
interesting what happens to the ninth
9.5 percent of people who don’t want to
do that I think most people don’t want
to be dead but I do think most people
want to have some control over how their
dying process proceeds so I’m impounding
euthanasia but I do think we have to
give people back some control its
deprives euthanasia of its oxygen supply
I think we should be looking at stopping
the want for euthanasia not for making
it illegal or legal or worrying about it
at all this is a quote from from Dame
Cicely Saunders whom I met when I was a
medical student she founded the hospice
movement and she says you matter because
you are and you matter to the last
moment of your life and I firmly believe
that that’s the message that we have to
carry forward thank you