Let's talk about dying
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0:01 - 0:03Look, I had second thoughts, really,
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0:03 - 0:05about whether I could talk about this
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0:05 - 0:08to such a vital and alive audience as you guys.
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0:08 - 0:10Then I remembered the quote from Gloria Steinem,
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0:10 - 0:12which goes,
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0:12 - 0:14"The truth will set you free,
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0:14 - 0:18but first it will piss you off." (Laughter)
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0:18 - 0:20So -- (Laughter)
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0:20 - 0:22So with that in mind, I'm going to set about
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0:22 - 0:24trying to do those things here,
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0:24 - 0:26and talk about dying in the 21st century.
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0:26 - 0:28Now the first thing that will piss you off, undoubtedly,
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0:28 - 0:31is that all of us are, in fact, going to die
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0:31 - 0:32in the 21st century.
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0:32 - 0:34There will be no exceptions to that.
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0:34 - 0:37There are, apparently, about one in eight of you
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0:37 - 0:39who think you're immortal, on surveys, but --
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0:39 - 0:41(Laughter)
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0:41 - 0:46Unfortunately, that isn't going to happen.
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0:46 - 0:48While I give this talk, in the next 10 minutes,
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0:48 - 0:51a hundred million of my cells will die,
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0:51 - 0:54and over the course of today, 2,000 of my brain cells
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0:54 - 0:56will die and never come back,
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0:56 - 0:58so you could argue that the dying process
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0:58 - 1:00starts pretty early in the piece.
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1:00 - 1:02Anyway, the second thing I want to say about dying in the
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1:02 - 1:0521st century, apart from it's going to happen to everybody,
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1:05 - 1:07is it's shaping up to be a bit of a train wreck
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1:07 - 1:10for most of us,
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1:10 - 1:13unless we do something to try and reclaim this process
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1:13 - 1:16from the rather inexorable trajectory that it's currently on.
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1:16 - 1:18So there you go. That's the truth.
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1:18 - 1:20No doubt that will piss you off, and now let's see
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1:20 - 1:22whether we can set you free. I don't promise anything.
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1:22 - 1:25Now, as you heard in the intro, I work in intensive care,
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1:25 - 1:28and I think I've kind of lived through the heyday
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1:28 - 1:30of intensive care. It's been a ride, man.
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1:30 - 1:31This has been fantastic.
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1:31 - 1:33We have machines that go ping.
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1:33 - 1:35There's many of them up there.
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1:35 - 1:38And we have some wizard technology which I think
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1:38 - 1:40has worked really well, and over the course of the time
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1:40 - 1:42I've worked in intensive care, the death rate
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1:42 - 1:45for males in Australia has halved,
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1:45 - 1:46and intensive care has had something to do with that.
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1:46 - 1:48Certainly, a lot of the technologies that we use
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1:48 - 1:50have got something to do with that.
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1:50 - 1:53So we have had tremendous success, and we kind of
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1:53 - 1:55got caught up in our own success quite a bit,
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1:55 - 1:59and we started using expressions like "lifesaving."
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1:59 - 2:01I really apologize to everybody for doing that,
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2:01 - 2:02because obviously, we don't.
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2:02 - 2:05What we do is prolong people's lives,
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2:05 - 2:07and delay death,
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2:07 - 2:10and redirect death, but we can't, strictly speaking,
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2:10 - 2:13save lives on any sort of permanent basis.
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2:13 - 2:15And what's really happened over the period of time
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2:15 - 2:17that I've been working in intensive care is that
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2:17 - 2:21the people whose lives we started saving back in the '70s,
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2:21 - 2:25'80s, and '90s, are now coming to die in the 21st century
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2:25 - 2:29of diseases that we no longer have the answers to
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2:29 - 2:31in quite the way we did then.
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2:31 - 2:33So what's happening now is there's been a big shift
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2:33 - 2:35in the way that people die,
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2:35 - 2:37and most of what they're dying of now isn't as amenable
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2:37 - 2:40to what we can do as what it used to be like
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2:40 - 2:44when I was doing this in the '80s and '90s.
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2:44 - 2:47So we kind of got a bit caught up with this,
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2:47 - 2:50and we haven't really squared with you guys about
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2:50 - 2:54what's really happening now, and it's about time we did.
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2:54 - 2:57I kind of woke up to this bit in the late '90s
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2:57 - 2:59when I met this guy.
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2:59 - 3:04This guy is called Jim, Jim Smith, and he looked like this.
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3:04 - 3:06I was called down to the ward to see him.
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3:06 - 3:08His is the little hand.
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3:08 - 3:10I was called down to the ward to see him
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3:10 - 3:11by a respiratory physician.
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3:11 - 3:13He said, "Look, there's a guy down here.
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3:13 - 3:15He's got pneumonia,
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3:15 - 3:17and he looks like he needs intensive care.
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3:17 - 3:19His daughter's here and she wants everything possible
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3:19 - 3:22to be done."
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3:22 - 3:24Which is a familiar phrase to us.
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3:24 - 3:26So I go down to the ward and see Jim,
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3:26 - 3:28and his skin his translucent like this.
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3:28 - 3:30You can see his bones through the skin.
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3:30 - 3:32He's very, very thin,
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3:32 - 3:35and he is, indeed, very sick with pneumonia,
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3:35 - 3:37and he's too sick to talk to me,
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3:37 - 3:42so I talk to his daughter Kathleen, and I say to her,
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3:42 - 3:45"Did you and Jim ever talk about
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3:45 - 3:46what you would want done
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3:46 - 3:48if he ended up in this kind of situation?"
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3:48 - 3:52And she looked at me and said, "No, of course not!"
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3:52 - 3:57I thought, "Okay. Take this steady."
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3:57 - 4:00And I got talking to her, and after a while, she said to me,
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4:00 - 4:03"You know, we always thought there'd be time."
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4:03 - 4:07Jim was 94. (Laughter)
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4:07 - 4:09And I realized that something wasn't happening here.
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4:09 - 4:11There wasn't this dialogue going on
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4:11 - 4:13that I imagined was happening.
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4:13 - 4:16So a group of us started doing survey work,
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4:16 - 4:18and we looked at four and a half thousand nursing home
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4:18 - 4:22residents in Newcastle, in the Newcastle area,
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4:22 - 4:25and discovered that only one in a hundred of them
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4:25 - 4:28had a plan about what to do when their hearts stopped beating.
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4:28 - 4:29One in a hundred.
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4:29 - 4:32And only one in 500 of them had plan about what to do
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4:32 - 4:35if they became seriously ill.
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4:35 - 4:38And I realized, of course, this dialogue
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4:38 - 4:43is definitely not occurring in the public at large.
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4:43 - 4:44Now, I work in acute care.
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4:44 - 4:46This is John Hunter Hospital.
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4:46 - 4:50And I thought, surely, we do better than that.
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4:50 - 4:53So a colleague of mine from nursing called Lisa Shaw and I
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4:53 - 4:56went through hundreds and hundreds of sets of notes
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4:56 - 4:57in the medical records department
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4:57 - 5:00looking at whether there was any sign at all
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5:00 - 5:02that anybody had had any conversation about
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5:02 - 5:04what might happen to them if the treatment they were
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5:04 - 5:07receiving was unsuccessful to the point that they would die.
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5:07 - 5:10And we didn't find a single record of any preference
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5:10 - 5:14about goals, treatments or outcomes from any
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5:14 - 5:19of the sets of notes initiated by a doctor or by a patient.
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5:19 - 5:21So we started to realize
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5:21 - 5:24that we had a problem,
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5:24 - 5:29and the problem is more serious because of this.
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5:29 - 5:32What we know is that obviously we are all going to die,
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5:32 - 5:35but how we die is actually really important,
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5:35 - 5:38obviously not just to us, but also to how that
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5:38 - 5:41features in the lives of all the people who live on afterwards.
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5:41 - 5:44How we die lives on in the minds of everybody
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5:44 - 5:47who survives us, and
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5:47 - 5:51the stress created in families by dying is enormous,
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5:51 - 5:53and in fact you get seven times as much stress by dying
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5:53 - 5:56in intensive care as by dying just about anywhere else,
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5:56 - 5:59so dying in intensive care is not your top option
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5:59 - 6:01if you've got a choice.
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6:01 - 6:04And, if that wasn't bad enough, of course,
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6:04 - 6:06all of this is rapidly progressing towards the fact that
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6:06 - 6:09many of you, in fact, about one in 10 of you at this point,
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6:09 - 6:10will die in intensive care.
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6:10 - 6:11In the U.S., it's one in five.
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6:11 - 6:15In Miami, it's three out of five people die in intensive care.
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6:15 - 6:17So this is the sort of momentum
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6:17 - 6:20that we've got at the moment.
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6:20 - 6:22The reason why this is all happening is due to this,
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6:22 - 6:23and I do have to take you through what this is about.
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6:23 - 6:25These are the four ways to go.
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6:25 - 6:28So one of these will happen to all of us.
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6:28 - 6:31The ones you may know most about are the ones
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6:31 - 6:34that are becoming increasingly of historical interest:
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6:34 - 6:35sudden death.
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6:35 - 6:36It's quite likely in an audience this size
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6:36 - 6:39this won't happen to anybody here.
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6:39 - 6:41Sudden death has become very rare.
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6:41 - 6:43The death of Little Nell and Cordelia and all that sort of stuff
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6:43 - 6:45just doesn't happen anymore.
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6:45 - 6:47The dying process of those with terminal illness
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6:47 - 6:48that we've just seen
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6:48 - 6:50occurs to younger people.
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6:50 - 6:53By the time you've reached 80, this is unlikely to happen to you.
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6:53 - 6:56Only one in 10 people who are over 80 will die of cancer.
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6:56 - 7:01The big growth industry are these.
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7:01 - 7:04What you die of is increasing organ failure,
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7:04 - 7:07with your respiratory, cardiac, renal,
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7:07 - 7:08whatever organs packing up. Each of these
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7:08 - 7:11would be an admission to an acute care hospital,
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7:11 - 7:13at the end of which, or at some point during which,
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7:13 - 7:15somebody says, enough is enough, and we stop.
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7:15 - 7:18And this one's the biggest growth industry of all,
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7:18 - 7:20and at least six out of 10 of the people in this room
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7:20 - 7:23will die in this form, which is
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7:23 - 7:27the dwindling of capacity
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7:27 - 7:29with increasing frailty,
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7:29 - 7:31and frailty's an inevitable part of aging,
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7:31 - 7:34and increasing frailty is in fact the main thing
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7:34 - 7:35that people die of now,
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7:35 - 7:37and the last few years, or the last year of your life
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7:37 - 7:41is spent with a great deal of disability, unfortunately.
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7:41 - 7:44Enjoying it so far? (Laughs)
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7:44 - 7:48(Laughter)
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7:48 - 7:51Sorry, I just feel such a, I feel such a Cassandra here.
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7:51 - 7:56(Laughter)
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7:56 - 7:57What can I say that's positive? What's positive is
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7:57 - 8:00that this is happening at very great age, now.
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8:00 - 8:02We are all, most of us, living to reach this point.
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8:02 - 8:04You know, historically, we didn't do that.
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8:04 - 8:06This is what happens to you
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8:06 - 8:08when you live to be a great age,
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8:08 - 8:10and unfortunately, increasing longevity does mean
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8:10 - 8:12more old age, not more youth.
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8:12 - 8:18I'm sorry to say that. (Laughter)
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8:18 - 8:20What we did, anyway, look, what we did,
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8:20 - 8:21we didn't just take this lying down
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8:21 - 8:23at John Hunter Hospital and elsewhere.
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8:23 - 8:25We've started a whole series of projects
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8:25 - 8:28to try and look about whether we could, in fact, involve
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8:28 - 8:31people much more in the way that things happen to them.
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8:31 - 8:32But we realized, of course, that we are dealing
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8:32 - 8:35with cultural issues,
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8:35 - 8:36and this is, I love this Klimt painting,
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8:36 - 8:39because the more you look at it, the more you kind of get
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8:39 - 8:41the whole issue that's going on here,
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8:41 - 8:44which is clearly the separation of death from the living,
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8:44 - 8:46and the fear — Like, if you actually look,
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8:46 - 8:47there's one woman there
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8:47 - 8:49who has her eyes open.
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8:49 - 8:51She's the one he's looking at,
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8:51 - 8:54and [she's] the one he's coming for. Can you see that?
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8:54 - 8:56She looks terrified.
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8:56 - 8:57It's an amazing picture.
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8:57 - 9:00Anyway, we had a major cultural issue.
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9:00 - 9:02Clearly, people didn't want us to talk about death,
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9:02 - 9:03or, we thought that.
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9:03 - 9:05So with loads of funding from the Federal Government
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9:05 - 9:06and the local Health Service, we introduced a thing
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9:06 - 9:09at John Hunter called Respecting Patient Choices.
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9:09 - 9:12We trained hundreds of people to go to the wards
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9:12 - 9:15and talk to people about the fact that they would die,
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9:15 - 9:18and what would they prefer under those circumstances.
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9:18 - 9:21They loved it. The families and the patients, they loved it.
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9:21 - 9:24Ninety-eight percent of people really thought
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9:24 - 9:25this just should have been normal practice,
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9:25 - 9:27and that this is how things should work.
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9:27 - 9:29And when they expressed wishes,
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9:29 - 9:31all of those wishes came true, as it were.
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9:31 - 9:33We were able to make that happen for them.
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9:33 - 9:36But then, when the funding ran out,
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9:36 - 9:38we went back to look six months later,
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9:38 - 9:40and everybody had stopped again,
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9:40 - 9:43and nobody was having these conversations anymore.
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9:43 - 9:45So that was really kind of heartbreaking for us,
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9:45 - 9:48because we thought this was going to really take off.
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9:48 - 9:52The cultural issue had reasserted itself.
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9:52 - 9:53So here's the pitch:
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9:53 - 9:57I think it's important that we don't just get on this freeway
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9:57 - 10:00to ICU without thinking hard about whether or not
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10:00 - 10:01that's where we all want to end up,
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10:01 - 10:03particularly as we become older and increasingly frail
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10:03 - 10:07and ICU has less and less and less to offer us.
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10:07 - 10:09There has to be a little side road
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10:09 - 10:14off there for people who don't want to go on that track.
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10:14 - 10:17And I have one small idea,
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10:17 - 10:21and one big idea about what could happen.
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10:21 - 10:22And this is the small idea.
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10:22 - 10:25The small idea is, let's all of us
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10:25 - 10:29engage more with this in the way that Jason has illustrated.
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10:29 - 10:31Why can't we have these kinds of conversations
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10:31 - 10:32with our own elders
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10:32 - 10:35and people who might be approaching this?
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10:35 - 10:37There are a couple of things you can do.
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10:37 - 10:39One of them is, you can,
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10:39 - 10:42just ask this simple question. This question never fails.
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10:42 - 10:46"In the event that you became too sick to speak for yourself,
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10:46 - 10:49who would you like to speak for you?"
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10:49 - 10:50That's a really important question to ask people,
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10:50 - 10:52because giving people the control over who that is
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10:52 - 10:56produces an amazing outcome.
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10:56 - 10:57The second thing you can say is,
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10:57 - 10:58"Have you spoken to that person
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10:58 - 11:00about the things that are important to you
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11:00 - 11:04so that we've got a better idea of what it is we can do?"
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11:04 - 11:07So that's the little idea.
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11:07 - 11:09The big idea, I think, is more political.
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11:09 - 11:10I think we have to get onto this.
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11:10 - 11:14I suggested we should have Occupy Death.
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11:14 - 11:16(Laughter)
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11:16 - 11:19My wife said, "Yeah, right, sit-ins in the mortuary.
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11:19 - 11:21Yeah, yeah. Sure." (Laughter)
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11:21 - 11:23So that one didn't really run,
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11:23 - 11:25but I was very struck by this.
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11:25 - 11:27Now, I'm an aging hippie.
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11:27 - 11:29I don't know, I don't think I look like that anymore, but
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11:29 - 11:32I had, two of my kids were born at home in the '80s
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11:32 - 11:35when home birth was a big thing, and we baby boomers
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11:35 - 11:38are used to taking charge of the situation,
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11:38 - 11:41so if you just replace all these words of birth,
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11:41 - 11:44I like "Peace, Love, Natural Death" as an option.
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11:44 - 11:46I do think we have to get political
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11:46 - 11:48and start to reclaim this process from
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11:48 - 11:50the medicalized model in which it's going.
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11:50 - 11:52Now, listen, that sounds like a pitch for euthanasia.
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11:52 - 11:55I want to make it absolutely crystal clear to you all,
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11:55 - 11:57I hate euthanasia. I think it's a sideshow.
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11:57 - 12:00I don't think euthanasia matters.
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12:00 - 12:02I actually think that,
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12:02 - 12:04in places like Oregon,
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12:04 - 12:08where you can have physician-assisted suicide,
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12:08 - 12:10you take a poisonous dose of stuff,
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12:10 - 12:12only half a percent of people ever do that.
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12:12 - 12:14I'm more interested in what happens to the 99.5 percent
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12:14 - 12:16of people who don't want to do that.
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12:16 - 12:19I think most people don't want to be dead,
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12:19 - 12:21but I do think most people want to have some control
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12:21 - 12:23over how their dying process proceeds.
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12:23 - 12:25So I'm an opponent of euthanasia,
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12:25 - 12:27but I do think we have to give people back some control.
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12:27 - 12:31It deprives euthanasia of its oxygen supply.
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12:31 - 12:32I think we should be looking at stopping
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12:32 - 12:33the want for euthanasia,
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12:33 - 12:38not for making it illegal or legal or worrying about it at all.
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12:38 - 12:41This is a quote from Dame Cicely Saunders,
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12:41 - 12:43whom I met when I was a medical student.
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12:43 - 12:46She founded the hospice movement.
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12:46 - 12:48And she said, "You matter because you are,
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12:48 - 12:50and you matter to the last moment of your life."
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12:50 - 12:53And I firmly believe that
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12:53 - 12:56that's the message that we have to carry forward.
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12:56 - 12:59Thank you. (Applause)
- Title:
- Let's talk about dying
- Speaker:
- Peter Saul
- Description:
-
We can’t control if we’ll die, but we can “occupy death,” in the words of Dr. Peter Saul. He calls on us to make clear our preferences for end of life care -- and suggests two questions for starting the conversation. (Filmed at TEDxNewy.)
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 13:19
Thu-Huong Ha edited English subtitles for Let's talk about dying | ||
Thu-Huong Ha approved English subtitles for Let's talk about dying | ||
Thu-Huong Ha approved English subtitles for Let's talk about dying | ||
Thu-Huong Ha edited English subtitles for Let's talk about dying | ||
Thu-Huong Ha edited English subtitles for Let's talk about dying |