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00:00Figaro, Figaro, Figaro, Figaro!
00:13Look, I had second thoughts really about whether I could talk about this
00:17to such a vital and alive audience as you guys.
00:20But then I remembered the quote from Gloria Steinem, which goes,
00:24The truth will set you free, but first it will piss you off.
00:32So with that in mind, I'm going to set about trying to do those things here
00:36and talk about dying in the 21st century.
00:38Now, the first thing that will piss you off, undoubtedly,
00:40is that all of us are, in fact, going to die in the 21st century.
00:44There will be no exceptions to that.
00:46There are apparently about one in eight of you who think you're immortal on surveys,
00:51but unfortunately this isn't going to happen.
00:58While I give this talk, in the next ten minutes,
01:00100 million of my cells will die.
01:03And over the course of today, 2,000 of my brain cells will die and never come back.
01:08So you could argue that the dying process starts pretty early in the piece.
01:13Anyway, the second thing I want to say about dying in the 21st century,
01:15apart from it's going to happen to everybody,
01:17is it's shaping up to be a bit of a train wreck for most of us,
01:22unless we do something to try and reclaim this process
01:25from the rather inexorable trajectory that it's currently on.
01:28So there you go. That's the truth.
01:30No doubt that will piss you off.
01:31Now let's see whether we can set you free.
01:33I don't promise anything.
01:35Now, as you heard in the intro, I work in intensive care.
01:38And I think I've kind of lived through the heyday of intensive care.
01:41This has been a ride, man. This has been fantastic.
01:43We have machines that go ping.
01:45There's many of them up there.
01:47And we have some wizard technology, which I think has worked really well.
01:51And over the course of the time I've worked in intensive care,
01:54the death rate for males in Australia has halved.
01:56And intensive care has had something to do with that.
01:58Certainly a lot of the technologies that we use have got something to do with that.
02:02So we have had tremendous success.
02:04And we kind of got caught up in our own success quite a bit.
02:07And we started using expressions like life-saving.
02:11I really apologise to everybody for doing that, because obviously we don't.
02:14What we do is prolong people's lives and delay death and redirect death.
02:20But we can't, strictly speaking, save lives on any sort of permanent basis.
02:24And what's really happened over the period of time that I've been working in intensive care
02:28is that the people whose lives we started saving back in the 70s, 80s and 90s
02:34are now coming to die in the 21st century
02:37of diseases that we no longer have the answers to in quite the way we did then.
02:43So what's happening now is there's been a big shift in the way that people die.
02:47And most of what they're dying of now isn't as amenable to what we can do
02:51as what it used to be like when I was doing this in the 80s and 90s.
02:56So we kind of got a bit caught up with this.
02:59And we haven't really squared with you guys about what's really happening now.
03:03And it's about time we did.
03:07I kind of woke up to this a bit in the late 90s when I met this guy.
03:11And this guy is called Jim, Jim Smith.
03:15And he looked like this.
03:16I was called down to the ward to see him.
03:18His is the little hand.
03:20I was called down to the ward to see him by a respiratory physician.
03:23He said, look, there's a guy down here, he's got pneumonia.
03:27And he looks like he needs intensive care.
03:29His daughter's here and she wants everything possible to be done.
03:34Which is a familiar phrase to us.
03:36So I go down to the ward and see Jim.
03:38And his skin is translucent like this.
03:40You can see his bones through the skin.
03:42He's very, very thin.
03:44And he is indeed very sick with pneumonia.
03:47And he's too sick to talk to me.
03:49So I talk to his daughter, Kathleen, and I say to her,
03:54did you and Jim ever talk about what you would want done
03:58if he ended up in this kind of situation?
04:00And she looked at me and she said, no, of course not.
04:04I thought, okay, take this steady.
04:08And I got talking to her.
04:10And after a while, she said to me,
04:12you know, we always thought there'd be time.
04:15Jim was 94.
04:18And I realised that something wasn't happening here.
04:21There wasn't this dialogue going on that I imagined was happening.
04:25So a group of us started doing survey work
04:28and we looked at 4,500 nursing home residents in Newcastle,
04:32in the Newcastle area,
04:34and discovered that only one in a hundred of them
04:37had a plan about what to do when their heart stopped beating.
04:40One in a hundred.
04:42And only one in 500 of them
04:44had a plan about what to do if they became seriously ill.
04:48I realised, of course,
04:50this dialogue is definitely not occurring in the public at large.
04:55I work in acute care.
04:57This is John Hunter Hospital.
04:59And I thought, surely we do better than that.
05:02So a colleague of mine from nursing, called Lisa Shaw,
05:05and I went through hundreds and hundreds of sets of notes
05:08in their medical records department,
05:10looking at whether there was any sign at all
05:12that anybody had any conversation about what might happen to them
05:15if the treatment they were receiving
05:17was unsuccessful to the point that they would die.
05:19And we didn't find a single record
05:21of any preference about goals, treatments or outcomes
05:25from any of the sets of notes initiated by a doctor or by a patient.
05:30So we started to realise that we had a problem.
05:35And the problem is more serious because of this.
05:40What we know is that obviously we are all going to die,
05:43but how we die is actually really important.
05:46Obviously not just to us,
05:48but also to how that features in the lives
05:51of all the people who live on afterwards.
05:53How we die lives on in the minds of everybody who survives us.
05:57And the stress created in families by dying is enormous.
06:02And in fact you get seven times as much stress
06:04by dying in intensive care as by dying just about anywhere else.
06:07So dying in intensive care is not your top option if you've got a choice.
06:13And if that wasn't bad enough, of course,
06:15all of this is rapidly progressing towards the fact that many of you,
06:18in fact about one in ten of you at this point,
06:20will die in intensive care.
06:22In the US it's one in five.
06:23In Miami it's three out of five people die in intensive care.
06:26So this is the sort of momentum that we've got at the moment.
06:31The reason why this is all happening is due to this.
06:33And I do have to take you through what this is about.
06:36These are the four ways to go.
06:38So one of these will happen to all of us.
06:40The ones you may know most about
06:42are the ones that are becoming increasingly of historical interest.
06:46Sudden death.
06:47It's quite likely in an audience this size
06:49this won't happen to anybody here.
06:51Sudden death has become very rare.
06:53The death of little Nell and Cordelia and all that sort of stuff
06:56just doesn't happen anymore.
06:58The dying process of those with terminal illness that we've just seen
07:02occurs to younger people.
07:04By the time you've reached 80, this is unlikely to happen to you.
07:07Only one in ten people who are over 80 will die of cancer.
07:11The big growth industry are these.
07:15What you die of is increasing organ failure
07:18with your respiratory, cardiac, renal, whatever organs packing up.
07:22Each of these would be an admission to an acute care hospital
07:25at the end of which or at some point during which
07:27somebody says enough is enough and we stop.
07:30This one's the biggest growth industry of all
07:32and at least six out of ten of the people in this room will die of this form
07:36which is the dwindling of capacity with increasing frailty.
07:43Frailty is an inevitable part of ageing
07:45and increasing frailty is in fact the main thing that people die of now.
07:50The last few years or last year of your life
07:52is spent with a great deal of disability, unfortunately.
07:56Enjoying it so far?
08:02Sorry, I feel such a Cassandra here.
08:10What can I say that's positive?
08:12What's positive is that this is happening at a very great age now.
08:15We are all, most of us, living to reach this point.
08:18Historically we didn't do that.
08:19This is what happens to you when you live to be a great age.
08:23Unfortunately, increasing longevity does mean more old age, not more youth.
08:27I'm sorry to say that.
08:33What we did anyway, look, what we did,
08:35we didn't just take this lying down at John Hunter Hospital and elsewhere.
08:38We've started a whole series of projects to try and look about
08:40whether we could in fact involve people much more
08:43in the way that things happen to them.
08:46We realise, of course, that we are dealing with cultural issues.
08:49I love this Klimt painting because the more you look at it,
08:52the more you kind of get the whole issue that's going on here,
08:55which is clearly the separation of death from the living and the fear.
08:59If you actually look, there's one woman there who has her eyes open.
09:03She's the one he's looking at and he's the one he's coming for.
09:07Can you see that?
09:08She looks terrifying.
09:10It's an amazing picture.
09:12Anyway, we had a major cultural issue.
09:14Clearly people didn't want us to talk about death.
09:16Oh, we thought that.
09:17So with loads of funding from the federal government
09:19and the local health service,
09:20we introduced the thing at John Hunter called respecting patient choices.
09:24We trained hundreds of people to go to the wards
09:27and talk to people about the fact that they would die
09:30and what would they prefer under those circumstances.
09:32They loved it.
09:33The families and the patients, they loved it.
09:3698% of people really thought this just should be normal practice
09:39and that this is how things should work.
09:43When they expressed wishes, all of those wishes came true, as it were.
09:46We were able to make that happen for them.
09:49But then when the funding ran out, we went back to look six months later
09:52and everybody had stopped again.
09:55Nobody was having these conversations anymore.
09:58So that was really kind of heartbreaking for us
10:00because we thought this was going to really take off.
10:03The cultural issue had reasserted itself.
10:07So here's the pitch.
10:08I think it's important that we don't just get on this freeway to ICU
10:13without thinking hard about whether or not that's where we all want to end up,
10:16particularly as we become older and increasingly frail,
10:19and ICU has less and less and less to offer us.
10:22There has to be a little side road off there
10:27for people who don't want to go on that track.
10:30And I have one small idea and one big idea about what could happen.
10:37And this is a small idea.
10:38The small idea is let's all of us engage more with this
10:42in the way that Jason has illustrated.
10:44Why can't we have these kinds of conversations with our own elders
10:48and people who might be approaching this?
10:51There are a couple of things you can do.
10:52One of them is you can just ask this simple question.
10:56This question never fails.
10:58In the event that you became too sick to speak for yourself,
11:01who would you like to speak for you?
11:04That's a really important question to ask people
11:06because giving people the control over who that is
11:09produces an amazing outcome.
11:11The second thing you can say is,
11:12have you spoken to that person about the things that are important to you
11:16so that we can get a better idea of what it is we can do?
11:20So that's a little idea.
11:22The big idea I think is more political.
11:24I think we have to get on to this.
11:26I suggested we should have occupied death.
11:32My wife said, yeah, right, sit-ins in the mortuary.
11:35Yeah, yeah, sure.
11:37So that one didn't really run.
11:39But I was very struck by this.
11:41I'm an ageing hippie.
11:42I don't think I look like that anymore.
11:45Two of my kids were born at home in the 80s
11:48when home birth was a big thing.
11:50We baby boomers are used to taking charge of the situation.
11:54So if you just replace all these words of birth,
11:57I like peace, love, natural death as an option.
12:00I do think we have to get political
12:02and start to reclaim this process from the medicalised model
12:05in which it's going.
12:06Now, listen, that sounds like a pitch for euthanasia.
12:08I want to make it absolutely crystal clear to you all,
12:10I hate euthanasia.
12:11I think it's a sideshow.
12:13I don't think euthanasia matters.
12:15I actually think that in places like Oregon
12:20where you can have physician-assisted suicide,
12:23you take a poisonous dose of stuff,
12:25only half a percent of people ever do that.
12:27I'm more interested in what happens to the 99.5% of people
12:30who don't want to do that.
12:32I think most people don't want to be dead,
12:34but I do think most people want to have some control
12:36over how their dying process proceeds.
12:39So I'm opposed to euthanasia,
12:40but I do think we have to give people back some control.
12:43It deprives euthanasia of its oxygen supply.
12:46I think we should be looking at stopping the want for euthanasia,
12:49not for making it illegal or legal or worrying about it at all.
12:53This is a quote from Dame Cicely Saunders,
12:57whom I met when I was a medical student.
12:59She founded the hospice movement,
13:02and she says,
13:03You matter because you are,
13:04and you matter to the last moment of your life.
13:06And I firmly believe that that's the message
13:09that we have to carry forward.
13:12Thank you.