Let's talk about dying - Peter Saul
Summary
TLDRIn this thought-provoking talk, the speaker addresses the inevitability of death in the 21st century and the challenges it presents. Highlighting the shift in causes of death and the limitations of intensive care, the speaker emphasizes the importance of open dialogue about end-of-life preferences. Through personal stories and statistics, they advocate for reclaiming control over the dying process, suggesting both individual and political action to ensure a more humane and dignified end to life.
Takeaways
- đĄ The inevitability of death in the 21st century is a truth that may upset some, but it's a reality that everyone must face.
- đź The belief in personal immortality is common, with surveys showing one in eight people think they won't die, but this is a misconception.
- đ§ The process of dying begins early, with millions of cells dying daily, including brain cells, highlighting that the end of life is a gradual process.
- đ Intensive care has seen great success in reducing death rates, especially for males in Australia, but this has also led to a reliance on technology.
- đ There's a shift in how people die, with diseases of old age being less responsive to intensive care treatments than in the past.
- đŽ The aging population is leading to more deaths from organ failure and frailty, which are less treatable with current medical interventions.
- đ„ The lack of dialogue about end-of-life preferences is a significant issue, with few having plans in place for serious illness or death.
- đ€ The importance of discussing end-of-life preferences with family and healthcare providers is emphasized to ensure wishes are respected.
- đ A cultural issue exists around discussing death, which hinders the implementation of patient-centered care plans.
- đ± The idea of 'respecting patient choices' was well-received when introduced, but the practice did not continue without ongoing support.
- đ€ïž The speaker advocates for a cultural and political shift to reclaim the process of dying from the medicalized model, focusing on patient autonomy.
Q & A
What quote does the speaker begin with and why is it relevant to the topic?
-The speaker begins with a quote from Gloria Steinem: 'The truth will set you free, but first it will piss you off.' It is relevant because the speaker is about to discuss the uncomfortable yet inevitable truth about death and how it is often avoided or misunderstood in contemporary society.
What is the speaker's profession and how does it relate to the topic of dying in the 21st century?
-The speaker works in intensive care and has witnessed the evolution of death and dying due to advances in medical technology. Their profession is directly related to the topic as they deal with life and death situations regularly and have insights into how death is managed in modern healthcare.
How does the speaker describe the process of dying in the 21st century as it relates to intensive care?
-The speaker describes the process of dying in the 21st century as a 'train wreck' for most people, with intensive care often being a place where people end up due to the lack of other options, despite the fact that it may not be the most desirable or appropriate place for them to die.
What is the significance of the speaker's encounter with Jim Smith in the narrative?
-The encounter with Jim Smith is significant because it made the speaker realize the lack of dialogue and planning around end-of-life care. Jim's situation highlighted the absence of conversations about preferences for care when faced with severe illness or death.
What did the speaker and their colleague Lisa Shaw find when they reviewed medical records regarding end-of-life conversations?
-They found that there was no record of any doctor or patient initiating a conversation about goals, treatments, or outcomes in the event of unsuccessful treatment leading to death. This indicated a significant gap in communication about end-of-life care.
What is the 'Respecting Patient Choices' initiative mentioned in the script and what was its outcome?
-The 'Respecting Patient Choices' initiative was a program introduced at John Hunter Hospital to train staff to discuss end-of-life preferences with patients. The outcome was positive, with 98% of people believing it should be standard practice, and it led to patients' wishes being fulfilled. However, once the funding ended, the practice stopped, indicating the cultural resistance to discussing death.
What are the four ways to die mentioned in the script and which one is the 'biggest growth industry'?
-The four ways to die mentioned are sudden death, the dying process of those with terminal illness, increasing organ failure, and the dwindling of capacity with increasing frailty. The 'biggest growth industry' is the dwindling of capacity with increasing frailty, which is now the main cause of death for many people.
What is the speaker's 'small idea' for improving the situation of dying in the 21st century?
-The speaker's 'small idea' is for individuals to engage more in conversations about end-of-life preferences with their elders and loved ones. This includes asking who they would want to speak for them if they became too sick to speak for themselves and ensuring that person is aware of their wishes.
What is the speaker's 'big idea' and how does it relate to the cultural issue of death?
-The speaker's 'big idea' is to get political and reclaim the process of dying from the medicalized model that currently dominates it. This involves advocating for more control over the dying process, not necessarily through euthanasia, but by addressing the cultural issues that prevent open discussions about death and end-of-life preferences.
What does the speaker mean when they say they are an opponent of euthanasia and why?
-The speaker opposes euthanasia because they believe it is a sideshow and not the main issue. They argue that the focus should be on giving people control over their dying process, which would reduce the demand for euthanasia. The speaker is more concerned with the experiences of the majority who do not choose euthanasia.
How does the speaker conclude their talk and what message do they want to leave with the audience?
-The speaker concludes by emphasizing the importance of recognizing that every individual matters until the last moment of their life, as quoted from Dame Cicely Saunders, the founder of the hospice movement. The message is to carry forward the idea of respecting patient choices and having open conversations about death and dying.
Outlines
đ Facing the Inevitability of Death in the 21st Century
The speaker begins by expressing initial apprehension about discussing the topic of death with the audience, but is inspired by Gloria Steinem's quote to confront the truth. The main theme revolves around the certainty of death in the 21st century and the speaker humorously addresses the misconception of immortality. They discuss the biological process of dying, which begins early in life, and the current state of healthcare, particularly in intensive care units, where the focus has been on life prolongation rather than quality of life. The speaker highlights the shift in causes of death and the inadequacy of current medical approaches to address modern health issues, emphasizing the need for a change in dialogue around death and dying.
đ„ The Cultural and Medical Disconnect on End-of-Life Care
This paragraph delves into the lack of communication and planning regarding end-of-life care. The speaker shares the findings of a survey indicating that a vast majority of nursing home residents lack any formal plan for their final days. The absence of documented patient preferences in medical records is highlighted, revealing a significant gap in patient care. The speaker emphasizes the importance of how we die, not just for the individual but also for the impact on surviving family members. The increasing prevalence of dying in intensive care units is discussed, along with the associated stress and the need for a more compassionate and patient-centered approach to end-of-life care.
đ± Reclaiming Control Over the Dying Process
The speaker presents a call to action to take control over the dying process, advocating for a shift away from the medicalized approach to a more personal and culturally aware one. They propose both small and big ideas to facilitate this change, starting with personal conversations about end-of-life preferences. The speaker suggests asking elders who they would want to speak for them if they were unable to do so, and ensuring that person is aware of their wishes. On a larger scale, the speaker encourages a political movement to 'occupy death,' reclaiming the process from the medical establishment and focusing on individual autonomy and quality of life in the final stages of life. The speaker clarifies their stance against euthanasia and emphasizes the importance of respecting patient choices and the value of every life until its last moment.
Mindmap
Keywords
đĄDying
đĄTruth
đĄIntensive Care
đĄLife-Saving
đĄDeath Rate
đĄNursing Home Residents
đĄDialogue
đĄStress
đĄCultural Issue
đĄRespecting Patient Choices
đĄEuthanasia
đĄFrailty
Highlights
The speaker begins with a Gloria Steinem quote emphasizing the importance of facing the truth about death.
The undeniable fact that everyone will die in the 21st century is presented, challenging the belief of immortality.
The speaker points out that the dying process starts early, with millions of cells dying daily.
A 'train wreck' metaphor is used to describe the current state of dying in the 21st century, suggesting a need for change.
The speaker's work in intensive care is highlighted, showing a personal connection to the topic.
A significant reduction in the death rate for males in Australia is attributed to advancements in intensive care.
The speaker clarifies the misconception that life-saving technologies can save lives permanently.
A shift in the way people die is discussed, with a focus on diseases that are less responsive to current treatments.
The story of Jim Smith is shared to illustrate the lack of dialogue about end-of-life preferences.
Survey results reveal the startling lack of planning among nursing home residents regarding end-of-life care.
The absence of documented patient preferences in medical records is noted, indicating a systemic issue.
The impact of dying in intensive care on family stress is discussed, highlighting the negative aspects of this process.
The speaker presents statistics on the increasing likelihood of dying in intensive care, emphasizing a growing trend.
The four ways people die are outlined, with a focus on the increasing rarity of sudden death.
The concept of 'frailty' as a primary cause of death in the elderly is introduced.
The speaker shares initiatives at John Hunter Hospital to involve patients in end-of-life decisions.
The cultural resistance to discussing death is acknowledged as a barrier to change.
The speaker advocates for political action to reclaim the dying process from a medicalized model.
A call to action for individuals to engage in conversations about end-of-life preferences is made.
The speaker concludes with a quote from Dame Cicely Saunders, emphasizing the importance of valuing life until the end.
Transcripts
[Music]
[Applause]
look i had second thoughts really about
whether i could talk about this to such
a vital and a live 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
[Laughter]
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
um there are apparently about one in
eight of you who think you're immortal
on surveys but
unfortunately that doesn't this isn't
going to happen
um
while i give this talk in the next 10
minutes 100 million of my cells will die
and over the course of today 2000 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 what'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 it's
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 i work in intensive care
and i think i've kind of lived through
the heyday of intensive care this has
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 in
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 and 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 and
delay death and redirect death but we we
can't strictly speaking save lives on
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 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 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 wall to see him by
a respiratory physician he 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 to us
so i go down to the ward and see gym and
his skin is translucent like this you
can see his bones through the skin he'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 and said no of
course not
i thought okay
take this steady um
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 us started doing survey work
and we looked at four and a half
thousand nursing home residents in
newcastle 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 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
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 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 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 10
of you at this point will die in
intensive care in the us 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 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 nail 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 one 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 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
sorry i just feel such a
i feel such a cassandra here um
what can i say that's positive what's
positive is that this is happening at
very great age now we are we are all
most of us living to 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
i'm sorry to say that
um
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
um and this is i love this climped
painting because if 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 terrified
it's an amazing picture anyway we had a
major cultural issue clearly people
didn't want us to talk about death oh 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
nine uh 98 of people really thought this
just should be normal practice and that
this is how things should work
and when they express 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
to icu without thinking hard about
whether or not that's where we all want
to end up particularly as we come 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
uh 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 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 um you can
er 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 onto this i i
suggested we should have occupied death
my wife said i said rio right sitting's
in the mortuary yeah yeah sure
so that one didn't really run but i did
i was very struck by this now i'm in
aging hippie is i don't know i don't
think i look like that anymore but um i
had two two of my kids were born at home
in the in the 80s when home birth was a
big thing and now 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 a as an option i
do think we have to get political and
start to reclaim this process from the
medicalized 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 country 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
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 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
from dame sicily saunders whom i met
when i was a medical student she 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
[Music]
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