How to pronounce "surveys"

Transcriber: Son Huynh Reviewer: Denise RQ

Look, I had second thoughts about whether I could talk about this

to such a vital and alive audience as you guys.

But then, I remembered the quote from Gloria Steinem which goes,

"The truth will set you free, but first it will piss you off."

(Laughter)

So with that in mind,

I am 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 they are immortal.

That's on surveys, but unfortunately, that isn't going to happen.

While I give this talk in the next 10 minutes,

a hundred million of my cells will die.

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

apart from it's 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 inexorable trajectory that's currently on.

So there you go, that's the truth. No doubt that will piss you off.

Let's see whether we can set you free. I don't promise anything.

Now, as you heard in the intro, I work in intensive care.

I think I have lived through the heyday of intensive care.

This has been a ride, man; this has been fantastic.

We had machines that go, "Ping!". There's many of them up there.

We had some wizard technology which I think has worked really well.

Over the course of the time I worked in intensive care,

the death rate for males in Australia has halved.

And intensive care has something to do with that.

Certainly, a lot of the technologies that we used

have got something to do with that.

So we have had tremendous success.

We kind of got caught up in our own success quite a bit.

We started using expressions like "life saving";

I really apologize to everybody for doing that because obviously, we don't.

What we do is prolong people's lives,

delay death, and redirect death,

but we can't strictly speaking "save lives" on any sort of permanent basis.

What has 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.

Most of what they are dying of 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 got a bit caught up with this.

We haven't really squared with you guys about what's really happening now.

It's about time we did.

I kind of worked up to this a bit in the late 90s when I met this guy.

This guy is called Jim Smith. He looked like this.

I was called down to the ward to see him. His is the little hand.

I was called down to the ward to see him but our respiratory physician; he said,

"Look, there's a guy down here.

He's got pneumonia, and he looks like he needs intensive care.

His daughter's here, and she wants everything possible to be done."

Which is a familiar phrase to us.

So I go down to the ward and see Jim.

His skin is translucent like this.

You can see his bones through the skin. He's very, very thin.

And he is indeed very sick with pneumonia. He is too sick to talk to me.

So I talked to his daughter Kathleen, and I'd say to her,

"Did you and Jim have a talk about what you would want done

if he ended up in this kind of situation?"

She looked at me and said, "No, of course not!"

OK. Take this steady. I got talking to her.

After a while she said to me,

"You know, we always thought there'd be time."

Jim was 94.

I realized that something wasn't happening here.

There wasn't this dialogue going on that I imagined was happening.

So a group of us started doing survey work.

We looked at 4,500 nursing home residences in the Newcastle area.

And discovered that only one in 100 of them

had a plan about what to do when their hearts stop beating.

One in 100.

And only one in 500 of them had a plan about what to do

if they became seriously ill.

I realized, of course,

this dialogue is definitely not occurring in the public at large.

And I work in acute care. This is John Hunter Hospital.

And I thought, "Surely, we do better than that."

So a colleague of mine from nursing, called Lisa Shaw, and I

went through hundreds and hundreds of sets of notes in the medical records department

looking at whether there was any sign at all

that anybody had any conversation about what might happen to them

if the treatment they were receiving was unsuccessful

to the point that they would die.

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.

The problem is more serious because of this.

What we know is that obviously we all are 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.

The stress created in families by dying is enormous.

In fact, you get seven times as much stress by dying in intensive care

as by dying just about anywhere else.

Dying in intensive care is not your top option

if you 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 1 in 10 of you, at this point, will die in intensive care.

In the US it's 1 in 5.

In Miami it's 3 out of 5 people dying 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:

sudden 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 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.

And only 1 in 10 people who are over 80 will die of cancer.

The big growth industry are these.

What you die of is increasing organ failure,

with your respiratory, cardiac, renal, whatever organs packing up.

Each of these will 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 6 out of 10 of the people in this room will die in this form,

which is the dwindling of capacity with increasing frailty.

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?

(Laughter)

Sorry, I just feel such a-- I feel such a Cassandra here.

What can I say that's positive?

What's positive is that this is happening at very great age, now.

We are all, most of us, living to reach this point.

Historically, we didn't do that.

This is what happens to you when you live to be at great age.

Unfortunately, increasing longevity does mean more old age

not more youth.

I'm sorry to say that.

What we did anyway, 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 things happen to them.

But we realized of course, that we are dealing with culture issues.

I love this Klimt painting because the more you look at it,

the more you kind of get the whole issue, what's going on in here,

which is clearly the death, the separation of death from the living.

And the fear.

If you actually look, there's one woman there who has her eyes open.

She's the one he's looking at. She's the one he's coming for.

Can you see that? She looks terrified.

It's an amazing picture.

Anyway, we had a major culture issue.

Clearly people didn't want us to talk about death, or we thought that.

With loads of funding

from the federal government and the local health service,

we introduced a thing at 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.

Families and the patients, they loved it.

98% of people really thought this just should be normal practice,

and this is how things should work.

When they expressed wishes, all of those wishes came true as it were;

we were able to make it happen for them.

But then, when the funding ran out,

we went back to look 6 months later, everybody had stopped again.

Nobody was having these conversations anymore.

So that was really kind of heartbreaking for us

because we thought this was really going to take off.

The cultural issue had reasserted itself.

So here's the pitch:

I think it's important we don't just get on this freeway to ICU

without thinking hard about whether or not that's where we all want to end up,

particularly as we become older and increasingly frail,

and ICU has less and less and less to offer us.

There has to be a little side road.

Side road off there for people who don't want to go on that track.

I have one small idea and one big idea

about what could happen.

This is the small idea.

The small idea is let's all of us engaged more with this

in the way that Jason has 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 ask this simple question.

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 of 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've got a better idea of what it is we can do?"

So that's the little idea.

The big idea I think is more political.

I think we have to get onto this.

I suggest that we should have Occupy Death.

(Laughter)

My wife said, "Yeah, right, sit-ins in the mortuary.

Yeah, yeah. Sure."

(Laughter)

So that one didn't really run.

But I was very struck by this.

I'm an aging hippie.

I don't know, I don't think I look like that anymore,

but I had two of my kids born at home, in the 80s,

when home-birth was a big thing.

We baby boomers are used to taking charge of the situation.

So if we just replace all these words of birth.

I'd like peace, love, natural death as an option.

I do think we have to get political and start to reclaim this process

from the medicalized model in which is 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 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 interested in what happens

to the 99.5% 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 an opponent of euthanasia,

but I do think we have to give people back some control.

It 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 Dame Cicely Saunders

whom I met when I was a medical student.

She founded the hospice movement.

She says, "You matter because you are,

and you matter to the last moment of your life."

I firmly believe that that is message that we have to carry forward.

Thank you.

(Applause)