Let's talk about dying - Peter Saul

Summary

In 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

• 💡 The inevitability of death in the 21st century is a truth that may upset some, but it's a reality that everyone must face.
• 😮 The belief in personal immortality is common, with surveys showing one in eight people think they won't die, but this is a misconception.
• 🧠 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.
• 🚑 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.
• 🔄 There's a shift in how people die, with diseases of old age being less responsive to intensive care treatments than in the past.
• 👴 The aging population is leading to more deaths from organ failure and frailty, which are less treatable with current medical interventions.
• 🏥 The lack of dialogue about end-of-life preferences is a significant issue, with few having plans in place for serious illness or death.
• 🤔 The importance of discussing end-of-life preferences with family and healthcare providers is emphasized to ensure wishes are respected.
• 🏠 A cultural issue exists around discussing death, which hinders the implementation of patient-centered care plans.
• 🌱 The idea of 'respecting patient choices' was well-received when introduced, but the practice did not continue without ongoing support.
• 🛤️ 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

00:00

😔 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.

05:02

😥 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.

10:03

🌱 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.

Keywords

💡Dying

Dying is the process of nearing the end of life. In the video, it is a central theme, emphasizing that everyone will experience it in the 21st century. The speaker discusses the inevitability of death and the importance of having conversations about it, as well as the societal and medical implications of how we die.

💡Truth

The term 'truth' is used metaphorically to refer to the often uncomfortable reality of death. The speaker cites Gloria Steinem's quote to illustrate that acknowledging death may initially provoke anger or discomfort, but it is a necessary step towards acceptance and understanding.

💡Intensive Care

Intensive Care refers to a specialized medical unit that provides close monitoring and treatment for patients with severe health conditions. The speaker works in intensive care and discusses its role in prolonging life but not saving it permanently, reflecting on the shift in the nature of dying.

💡Life-Saving

The term 'life-saving' is often used to describe medical interventions that prevent immediate death. However, the speaker challenges this expression, clarifying that while intensive care can prolong life, it does not save lives in a permanent sense, as death is still inevitable.

💡Death Rate

Death rate is a statistic that represents the number of deaths in a population over a specific period. The speaker mentions that the death rate for males in Australia has halved, attributing this to advancements in intensive care and related technologies.

💡Nursing Home Residents

Nursing home residents are elderly individuals who live in long-term care facilities. The speaker's survey work revealed that a very small percentage of these residents had plans for end-of-life care, indicating a lack of preparedness and conversation about death.

💡Dialogue

Dialogue in this context refers to the communication between patients, their families, and healthcare providers about end-of-life preferences. The speaker highlights the absence of such dialogue in the general public and within healthcare settings, which is a significant issue that needs to be addressed.

💡Stress

Stress is a psychological and physiological response to demanding or threatening situations. The speaker discusses the high levels of stress experienced by families due to the death of a loved one, particularly when it occurs in intensive care, emphasizing the need for a more compassionate approach to dying.

💡Cultural Issue

Cultural issue refers to the societal norms and beliefs that influence attitudes and behaviors. The speaker identifies the reluctance to discuss death as a cultural issue that hinders open conversations about end-of-life care and preferences.

💡Respecting Patient Choices

Respecting Patient Choices is a program mentioned by the speaker that aimed to train healthcare professionals to discuss end-of-life preferences with patients. The initiative was well-received but faced challenges in sustainability due to cultural barriers and funding limitations.

💡Euthanasia

Euthanasia is the practice of intentionally ending a life to relieve pain and suffering. The speaker is opposed to euthanasia, viewing it as a sideshow, and instead advocates for giving people more control over their dying process, focusing on the experiences of the majority who do not choose this option.

💡Frailty

Frailty refers to a state of decreased strength and energy associated with aging. The speaker discusses frailty as a primary cause of death in the modern era, noting that increasing longevity results in more old age and the challenges that come with it.

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]