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