0:00:00.578,0:00:02.601
Look, I had second thoughts, really,

0:00:02.601,0:00:04.636
about whether I could talk about this

0:00:04.636,0:00:07.676
to such a vital and alive audience as you guys.

0:00:07.676,0:00:10.266
Then I remembered the quote from Gloria Steinem,

0:00:10.266,0:00:11.905
which goes,

0:00:11.905,0:00:13.836
"The truth will set you free,

0:00:13.836,0:00:17.795
but first it will piss you off." (Laughter)

0:00:17.795,0:00:20.063
So -- (Laughter)

0:00:20.063,0:00:22.187
So with that in mind, I'm going to set about

0:00:22.187,0:00:23.778
trying to do those things here,

0:00:23.778,0:00:25.640
and talk about dying in the 21st century.

0:00:25.640,0:00:28.040
Now the first thing that will piss you off, undoubtedly,

0:00:28.040,0:00:30.659
is that all of us are, in fact, going to die

0:00:30.659,0:00:31.733
in the 21st century.

0:00:31.733,0:00:34.123
There will be no exceptions to that.

0:00:34.123,0:00:36.780
There are, apparently, about one in eight of you

0:00:36.780,0:00:39.304
who think you're immortal, on surveys, but --

0:00:39.304,0:00:41.482
(Laughter)

0:00:41.482,0:00:46.095
Unfortunately, that isn't going to happen.

0:00:46.095,0:00:47.748
While I give this talk, in the next 10 minutes,

0:00:47.748,0:00:51.244
a hundred million of my cells will die,

0:00:51.244,0:00:53.838
and over the course of today, 2,000 of my brain cells

0:00:53.838,0:00:55.979
will die and never come back,

0:00:55.979,0:00:58.060
so you could argue that the dying process

0:00:58.060,0:01:00.138
starts pretty early in the piece.

0:01:00.138,0:01:02.252
Anyway, the second thing I want to say about dying in the

0:01:02.252,0:01:04.617
21st century, apart from it's going to happen to everybody,

0:01:04.617,0:01:07.233
is it's shaping up to be a bit of a train wreck

0:01:07.233,0:01:09.578
for most of us,

0:01:09.578,0:01:12.547
unless we do something to try and reclaim this process

0:01:12.547,0:01:16.264
from the rather inexorable trajectory that it's currently on.

0:01:16.264,0:01:18.072
So there you go. That's the truth.

0:01:18.072,0:01:19.503
No doubt that will piss you off, and now let's see

0:01:19.503,0:01:22.479
whether we can set you free. I don't promise anything.

0:01:22.479,0:01:25.062
Now, as you heard in the intro, I work in intensive care,

0:01:25.062,0:01:28.166
and I think I've kind of lived through the heyday

0:01:28.166,0:01:30.173
of intensive care. It's been a ride, man.

0:01:30.173,0:01:31.373
This has been fantastic.

0:01:31.373,0:01:32.528
We have machines that go ping.

0:01:32.528,0:01:34.838
There's many of them up there.

0:01:34.838,0:01:37.582
And we have some wizard technology which I think

0:01:37.582,0:01:40.094
has worked really well, and over the course of the time

0:01:40.094,0:01:42.166
I've worked in intensive care, the death rate

0:01:42.166,0:01:44.536
for males in Australia has halved,

0:01:44.536,0:01:46.155
and intensive care has had something to do with that.

0:01:46.155,0:01:48.163
Certainly, a lot of the technologies that we use

0:01:48.163,0:01:50.383
have got something to do with that.

0:01:50.383,0:01:52.887
So we have had tremendous success, and we kind of

0:01:52.887,0:01:55.241
got caught up in our own success quite a bit,

0:01:55.241,0:01:58.865
and we started using expressions like "lifesaving."

0:01:58.865,0:02:00.999
I really apologize to everybody for doing that,

0:02:00.999,0:02:02.229
because obviously, we don't.

0:02:02.229,0:02:04.757
What we do is prolong people's lives,

0:02:04.757,0:02:06.858
and delay death,

0:02:06.858,0:02:09.703
and redirect death, but we can't, strictly speaking,

0:02:09.703,0:02:12.558
save lives on any sort of permanent basis.

0:02:12.558,0:02:14.543
And what's really happened over the period of time

0:02:14.543,0:02:17.182
that I've been working in intensive care is that

0:02:17.182,0:02:20.752
the people whose lives we started saving back in the '70s,

0:02:20.752,0:02:25.230
'80s, and '90s, are now coming to die in the 21st century

0:02:25.230,0:02:28.830
of diseases that we no longer have the answers to

0:02:28.830,0:02:31.340
in quite the way we did then.

0:02:31.340,0:02:33.215
So what's happening now is there's been a big shift

0:02:33.215,0:02:35.022
in the way that people die,

0:02:35.022,0:02:37.293
and most of what they're dying of now isn't as amenable

0:02:37.293,0:02:40.119
to what we can do as what it used to be like

0:02:40.119,0:02:44.030
when I was doing this in the '80s and '90s.

0:02:44.030,0:02:46.894
So we kind of got a bit caught up with this,

0:02:46.894,0:02:49.927
and we haven't really squared with you guys about

0:02:49.927,0:02:53.982
what's really happening now, and it's about time we did.

0:02:53.982,0:02:57.373
I kind of woke up to this bit in the late '90s

0:02:57.373,0:02:59.467
when I met this guy.

0:02:59.467,0:03:03.824
This guy is called Jim, Jim Smith, and he looked like this.

0:03:03.824,0:03:06.127
I was called down to the ward to see him.

0:03:06.127,0:03:08.372
His is the little hand.

0:03:08.372,0:03:09.758
I was called down to the ward to see him

0:03:09.758,0:03:10.852
by a respiratory physician.

0:03:10.852,0:03:13.028
He said, "Look, there's a guy down here.

0:03:13.028,0:03:14.628
He's got pneumonia,

0:03:14.628,0:03:17.133
and he looks like he needs intensive care.

0:03:17.133,0:03:19.207
His daughter's here and she wants everything possible

0:03:19.207,0:03:21.738
to be done."

0:03:21.738,0:03:24.357
Which is a familiar phrase to us.

0:03:24.357,0:03:26.188
So I go down to the ward and see Jim,

0:03:26.188,0:03:27.873
and his skin his translucent like this.

0:03:27.873,0:03:30.123
You can see his bones through the skin.

0:03:30.123,0:03:31.661
He's very, very thin,

0:03:31.661,0:03:35.043
and he is, indeed, very sick with pneumonia,

0:03:35.043,0:03:36.524
and he's too sick to talk to me,

0:03:36.524,0:03:41.674
so I talk to his daughter Kathleen, and I say to her,

0:03:41.674,0:03:44.638
"Did you and Jim ever talk about

0:03:44.638,0:03:46.321
what you would want done

0:03:46.321,0:03:48.335
if he ended up in this kind of situation?"

0:03:48.335,0:03:52.064
And she looked at me and said, "No, of course not!"

0:03:52.064,0:03:57.124
I thought, "Okay. Take this steady."

0:03:57.124,0:03:59.968
And I got talking to her, and after a while, she said to me,

0:03:59.968,0:04:02.971
"You know, we always thought there'd be time."

0:04:02.971,0:04:06.737
Jim was 94. (Laughter)

0:04:06.737,0:04:09.271
And I realized that something wasn't happening here.

0:04:09.271,0:04:10.595
There wasn't this dialogue going on

0:04:10.595,0:04:13.248
that I imagined was happening.

0:04:13.248,0:04:16.255
So a group of us started doing survey work,

0:04:16.255,0:04:18.475
and we looked at four and a half thousand nursing home

0:04:18.475,0:04:21.815
residents in Newcastle, in the Newcastle area,

0:04:21.815,0:04:24.762
and discovered that only one in a hundred of them

0:04:24.762,0:04:27.827
had a plan about what to do when their hearts stopped beating.

0:04:27.827,0:04:28.966
One in a hundred.

0:04:28.966,0:04:32.307
And only one in 500 of them had plan about what to do

0:04:32.307,0:04:35.404
if they became seriously ill.

0:04:35.404,0:04:38.164
And I realized, of course, this dialogue

0:04:38.164,0:04:42.800
is definitely not occurring in the public at large.

0:04:42.800,0:04:44.278
Now, I work in acute care.

0:04:44.278,0:04:46.383
This is John Hunter Hospital.

0:04:46.383,0:04:50.384
And I thought, surely, we do better than that.

0:04:50.384,0:04:53.380
So a colleague of mine from nursing called Lisa Shaw and I

0:04:53.380,0:04:55.896
went through hundreds and hundreds of sets of notes

0:04:55.896,0:04:57.169
in the medical records department

0:04:57.169,0:04:59.790
looking at whether there was any sign at all

0:04:59.790,0:05:02.218
that anybody had had any conversation about

0:05:02.218,0:05:04.071
what might happen to them if the treatment they were

0:05:04.071,0:05:07.415
receiving was unsuccessful to the point that they would die.

0:05:07.415,0:05:10.356
And we didn't find a single record of any preference

0:05:10.356,0:05:14.200
about goals, treatments or outcomes from any

0:05:14.200,0:05:18.770
of the sets of notes initiated by a doctor or by a patient.

0:05:18.770,0:05:21.487
So we started to realize

0:05:21.487,0:05:23.688
that we had a problem,

0:05:23.688,0:05:28.711
and the problem is more serious because of this.

0:05:28.711,0:05:32.013
What we know is that obviously we are all going to die,

0:05:32.013,0:05:34.678
but how we die is actually really important,

0:05:34.678,0:05:38.233
obviously not just to us, but also to how that

0:05:38.233,0:05:41.367
features in the lives of all the people who live on afterwards.

0:05:41.367,0:05:43.688
How we die lives on in the minds of everybody

0:05:43.688,0:05:46.805
who survives us, and

0:05:46.805,0:05:50.537
the stress created in families by dying is enormous,

0:05:50.537,0:05:53.223
and in fact you get seven times as much stress by dying

0:05:53.223,0:05:55.960
in intensive care as by dying just about anywhere else,

0:05:55.960,0:05:59.038
so dying in intensive care is not your top option

0:05:59.038,0:06:01.496
if you've got a choice.

0:06:01.496,0:06:03.665
And, if that wasn't bad enough, of course,

0:06:03.665,0:06:06.313
all of this is rapidly progressing towards the fact that

0:06:06.313,0:06:08.665
many of you, in fact, about one in 10 of you at this point,

0:06:08.665,0:06:10.115
will die in intensive care.

0:06:10.115,0:06:11.449
In the U.S., it's one in five.

0:06:11.449,0:06:15.199
In Miami, it's three out of five people die in intensive care.

0:06:15.199,0:06:17.264
So this is the sort of momentum

0:06:17.264,0:06:19.552
that we've got at the moment.

0:06:19.552,0:06:22.097
The reason why this is all happening is due to this,

0:06:22.097,0:06:23.399
and I do have to take you through what this is about.

0:06:23.399,0:06:25.364
These are the four ways to go.

0:06:25.364,0:06:28.229
So one of these will happen to all of us.

0:06:28.229,0:06:30.759
The ones you may know most about are the ones

0:06:30.759,0:06:33.605
that are becoming increasingly of historical interest:

0:06:33.605,0:06:35.022
sudden death.

0:06:35.022,0:06:36.467
It's quite likely in an audience this size

0:06:36.467,0:06:39.018
this won't happen to anybody here.

0:06:39.018,0:06:40.748
Sudden death has become very rare.

0:06:40.748,0:06:43.203
The death of Little Nell and Cordelia and all that sort of stuff

0:06:43.203,0:06:44.876
just doesn't happen anymore.

0:06:44.876,0:06:47.293
The dying process of those with terminal illness

0:06:47.293,0:06:48.325
that we've just seen

0:06:48.325,0:06:49.940
occurs to younger people.

0:06:49.940,0:06:52.790
By the time you've reached 80, this is unlikely to happen to you.

0:06:52.790,0:06:56.205
Only one in 10 people who are over 80 will die of cancer.

0:06:56.205,0:07:01.040
The big growth industry are these.

0:07:01.040,0:07:04.291
What you die of is increasing organ failure,

0:07:04.291,0:07:06.526
with your respiratory, cardiac, renal,

0:07:06.526,0:07:08.306
whatever organs packing up. Each of these

0:07:08.306,0:07:10.909
would be an admission to an acute care hospital,

0:07:10.909,0:07:12.878
at the end of which, or at some point during which,

0:07:12.878,0:07:15.054
somebody says, enough is enough, and we stop.

0:07:15.054,0:07:17.622
And this one's the biggest growth industry of all,

0:07:17.622,0:07:20.197
and at least six out of 10 of the people in this room

0:07:20.197,0:07:22.759
will die in this form, which is

0:07:22.759,0:07:26.653
the dwindling of capacity

0:07:26.653,0:07:28.972
with increasing frailty,

0:07:28.972,0:07:31.222
and frailty's an inevitable part of aging,

0:07:31.222,0:07:33.775
and increasing frailty is in fact the main thing

0:07:33.775,0:07:34.824
that people die of now,

0:07:34.824,0:07:36.952
and the last few years, or the last year of your life

0:07:36.952,0:07:40.967
is spent with a great deal of disability, unfortunately.

0:07:40.967,0:07:44.351
Enjoying it so far? (Laughs)

0:07:44.351,0:07:47.504
(Laughter)

0:07:47.504,0:07:50.932
Sorry, I just feel such a, I feel such a Cassandra here.

0:07:50.932,0:07:56.090
(Laughter)

0:07:56.090,0:07:57.149
What can I say that's positive? What's positive is

0:07:57.149,0:07:59.564
that this is happening at very great age, now.

0:07:59.564,0:08:02.309
We are all, most of us, living to reach this point.

0:08:02.309,0:08:04.197
You know, historically, we didn't do that.

0:08:04.197,0:08:05.666
This is what happens to you

0:08:05.666,0:08:08.189
when you live to be a great age,

0:08:08.189,0:08:10.078
and unfortunately, increasing longevity does mean

0:08:10.078,0:08:12.005
more old age, not more youth.

0:08:12.005,0:08:18.098
I'm sorry to say that. (Laughter)

0:08:18.098,0:08:19.895
What we did, anyway, look, what we did,

0:08:19.895,0:08:21.422
we didn't just take this lying down

0:08:21.422,0:08:22.924
at John Hunter Hospital and elsewhere.

0:08:22.924,0:08:24.546
We've started a whole series of projects

0:08:24.546,0:08:27.542
to try and look about whether we could, in fact, involve

0:08:27.542,0:08:31.036
people much more in the way that things happen to them.

0:08:31.036,0:08:32.268
But we realized, of course, that we are dealing

0:08:32.268,0:08:34.612
with cultural issues,

0:08:34.612,0:08:36.471
and this is, I love this Klimt painting,

0:08:36.471,0:08:38.676
because the more you look at it, the more you kind of get

0:08:38.676,0:08:40.695
the whole issue that's going on here,

0:08:40.695,0:08:44.213
which is clearly the separation of death from the living,

0:08:44.213,0:08:46.093
and the fear — Like, if you actually look,

0:08:46.093,0:08:47.268
there's one woman there

0:08:47.268,0:08:49.187
who has her eyes open.

0:08:49.187,0:08:50.872
She's the one he's looking at,

0:08:50.872,0:08:54.100
and [she's] the one he's coming for. Can you see that?

0:08:54.100,0:08:55.626
She looks terrified.

0:08:55.626,0:08:57.319
It's an amazing picture.

0:08:57.319,0:08:59.540
Anyway, we had a major cultural issue.

0:08:59.540,0:09:01.524
Clearly, people didn't want us to talk about death,

0:09:01.524,0:09:03.019
or, we thought that.

0:09:03.019,0:09:04.966
So with loads of funding from the Federal Government

0:09:04.966,0:09:06.386
and the local Health Service, we introduced a thing

0:09:06.386,0:09:09.284
at John Hunter called Respecting Patient Choices.

0:09:09.284,0:09:12.133
We trained hundreds of people to go to the wards

0:09:12.133,0:09:15.276
and talk to people about the fact that they would die,

0:09:15.276,0:09:17.562
and what would they prefer under those circumstances.

0:09:17.562,0:09:21.081
They loved it. The families and the patients, they loved it.

0:09:21.081,0:09:23.541
Ninety-eight percent of people really thought

0:09:23.541,0:09:24.995
this just should have been normal practice,

0:09:24.995,0:09:27.378
and that this is how things should work.

0:09:27.378,0:09:29.316
And when they expressed wishes,

0:09:29.316,0:09:31.289
all of those wishes came true, as it were.

0:09:31.289,0:09:33.269
We were able to make that happen for them.

0:09:33.269,0:09:35.519
But then, when the funding ran out,

0:09:35.519,0:09:37.604
we went back to look six months later,

0:09:37.604,0:09:39.871
and everybody had stopped again,

0:09:39.871,0:09:43.064
and nobody was having these conversations anymore.

0:09:43.064,0:09:45.117
So that was really kind of heartbreaking for us,

0:09:45.117,0:09:47.834
because we thought this was going to really take off.

0:09:47.834,0:09:51.805
The cultural issue had reasserted itself.

0:09:51.805,0:09:52.960
So here's the pitch:

0:09:52.960,0:09:57.046
I think it's important that we don't just get on this freeway

0:09:57.046,0:09:59.545
to ICU without thinking hard about whether or not

0:09:59.545,0:10:01.338
that's where we all want to end up,

0:10:01.338,0:10:03.474
particularly as we become older and increasingly frail

0:10:03.474,0:10:07.128
and ICU has less and less and less to offer us.

0:10:07.128,0:10:09.458
There has to be a little side road

0:10:09.458,0:10:13.933
off there for people who don't want to go on that track.

0:10:13.933,0:10:16.569
And I have one small idea,

0:10:16.569,0:10:21.018
and one big idea about what could happen.

0:10:21.018,0:10:22.079
And this is the small idea.

0:10:22.079,0:10:24.860
The small idea is, let's all of us

0:10:24.860,0:10:28.796
engage more with this in the way that Jason has illustrated.

0:10:28.796,0:10:30.849
Why can't we have these kinds of conversations

0:10:30.849,0:10:32.170
with our own elders

0:10:32.170,0:10:34.960
and people who might be approaching this?

0:10:34.960,0:10:36.794
There are a couple of things you can do.

0:10:36.794,0:10:38.925
One of them is, you can,

0:10:38.925,0:10:41.839
just ask this simple question. This question never fails.

0:10:41.839,0:10:45.594
"In the event that you became too sick to speak for yourself,

0:10:45.594,0:10:48.527
who would you like to speak for you?"

0:10:48.527,0:10:50.441
That's a really important question to ask people,

0:10:50.441,0:10:52.464
because giving people the control over who that is

0:10:52.464,0:10:55.772
produces an amazing outcome.

0:10:55.772,0:10:56.918
The second thing you can say is,

0:10:56.918,0:10:58.416
"Have you spoken to that person

0:10:58.416,0:11:00.336
about the things that are important to you

0:11:00.336,0:11:04.490
so that we've got a better idea of what it is we can do?"

0:11:04.490,0:11:07.012
So that's the little idea.

0:11:07.012,0:11:08.506
The big idea, I think, is more political.

0:11:08.506,0:11:10.457
I think we have to get onto this.

0:11:10.457,0:11:13.519
I suggested we should have Occupy Death.

0:11:13.519,0:11:16.304
(Laughter)

0:11:16.304,0:11:18.874
My wife said, "Yeah, right, sit-ins in the mortuary.

0:11:18.874,0:11:21.453
Yeah, yeah. Sure." (Laughter)

0:11:21.453,0:11:23.318
So that one didn't really run,

0:11:23.318,0:11:24.988
but I was very struck by this.

0:11:24.988,0:11:26.701
Now, I'm an aging hippie.

0:11:26.701,0:11:29.198
I don't know, I don't think I look like that anymore, but

0:11:29.198,0:11:31.698
I had, two of my kids were born at home in the '80s

0:11:31.698,0:11:35.166
when home birth was a big thing, and we baby boomers

0:11:35.166,0:11:37.862
are used to taking charge of the situation,

0:11:37.862,0:11:41.260
so if you just replace all these words of birth,

0:11:41.260,0:11:44.341
I like "Peace, Love, Natural Death" as an option.

0:11:44.341,0:11:45.857
I do think we have to get political

0:11:45.857,0:11:48.455
and start to reclaim this process from

0:11:48.455,0:11:50.422
the medicalized model in which it's going.

0:11:50.422,0:11:52.462
Now, listen, that sounds like a pitch for euthanasia.

0:11:52.462,0:11:54.654
I want to make it absolutely crystal clear to you all,

0:11:54.654,0:11:57.318
I hate euthanasia. I think it's a sideshow.

0:11:57.318,0:11:59.505
I don't think euthanasia matters.

0:11:59.505,0:12:01.656
I actually think that,

0:12:01.656,0:12:04.205
in places like Oregon,

0:12:04.205,0:12:07.677
where you can have physician-assisted suicide,

0:12:07.677,0:12:09.894
you take a poisonous dose of stuff,

0:12:09.894,0:12:11.770
only half a percent of people ever do that.

0:12:11.770,0:12:14.476
I'm more interested in what happens to the 99.5 percent

0:12:14.476,0:12:16.232
of people who don't want to do that.

0:12:16.232,0:12:18.566
I think most people don't want to be dead,

0:12:18.566,0:12:20.663
but I do think most people want to have some control

0:12:20.663,0:12:23.405
over how their dying process proceeds.

0:12:23.405,0:12:24.545
So I'm an opponent of euthanasia,

0:12:24.545,0:12:27.198
but I do think we have to give people back some control.

0:12:27.198,0:12:30.671
It deprives euthanasia of its oxygen supply.

0:12:30.671,0:12:32.023
I think we should be looking at stopping

0:12:32.023,0:12:33.062
the want for euthanasia,

0:12:33.062,0:12:37.757
not for making it illegal or legal or worrying about it at all.

0:12:37.757,0:12:41.333
This is a quote from Dame Cicely Saunders,

0:12:41.333,0:12:42.702
whom I met when I was a medical student.

0:12:42.702,0:12:45.581
She founded the hospice movement.

0:12:45.581,0:12:47.772
And she said, "You matter because you are,

0:12:47.772,0:12:50.294
and you matter to the last moment of your life."

0:12:50.294,0:12:52.551
And I firmly believe that

0:12:52.551,0:12:55.637
that's the message that we have to carry forward.

0:12:55.637,0:12:58.656
Thank you. (Applause)