Begin endoflife conversations today

when i first heard

my loved ones terminal diagnosis

i’d spent six years of my career

researching

representations of laws in literature

but that didn’t prepare me for the news

i didn’t know what to say or do to make

things better

i found myself no longer researching

representations of loss

i was at a loss

i kept asking myself what did i miss how

could i be so

unprepared so i went back to my books

and i discovered from one myth and

several end of life

memoirs that my family and i could have

been

more prepared you can be more prepared

i’m here today to share with you some of

my findings

so let’s begin with the myth in greek

mythology

sisyphus is a cunning human king

and a rebel against the olympian gods he

is condemned

by zeus king of the gods to roll a giant

boulder

up a hill see it roll down again

walk down the hill to retrieve the

boulder and repeat the process

forever this story of fruitless labor

has captured the imagination of many

thinkers

including algerian french writer albert

kamu

kamu regards sisyphus’s situation as

absurd he tells us that we recognize

absurdity when we encounter an

experience in life which is neither

meaningful

nor explainable case in point the

sicipian task

but instead of a sisyphus who questions

pointlessly

why is this happening to me why do i

have to roll a giant boulder

up and down the hill for eternity

camus invites us to imagine sisyphus

happy as he defies the greek god’s

expectations

that misery would surely follow his

absurd

predicament

kamu wants us to picture this that every

time sisyphus walks down the hill to

retrieve the boulder

he imagines every grain of sand

and every mineral flick of that hill to

contain within

it a world to be lived

and experienced in a personally

meaningful

way the multitude of worlds

generated by the sand grains and mineral

flakes would allow sisyphus to live

a multitude of personally meaningful

lives this shift of focus from pointless

questioning

to imagining the possibility of living

a personally meaningful life in the face

of absurdity

is also encapsulated in stories written

by terminally ill writers

why is this happening to me this is a

question shared

by many patients upon hearing their

terminal diagnosis

but the sense of absurdity doesn’t end

there

it recurs as the body becomes

increasingly unresponsive

to the desire for it to be well again or

to offer a satisfactory answer to the

question

why me why now when there’s so much to

look forward to in life

when patients describe how their lives

have been turned upside down

by a terminal illness they are

describing how a life that was

full of potential is suddenly turned

into a potentially

meaningless one

but instead of remaining caught in this

feeling

writers like paul kalanithi and georgia

blaine overcome their initial response

to lead personally meaningful lives at

the end of life

how do they accomplish this i think this

has something to do

with the awareness that time is dual

both qualitative and quantitative

let’s begin thinking about quantitative

time

quantitative time is a more familiar

concept to us

because it is clock time in terms of

hours

minutes seconds that flow from past

present to future

deadlines anniversaries and milestones

in life all contribute to this sense of

certainty that your life flows in this

trajectory

but terminal illness disrupts this sense

of certainty

as it up ends our daily schedule and

threatens to shut down our future plans

to fulfill our hopes and dreams

what can medicine do to postpone my

death

this is a practical question to ask our

healthcare provider

but a second question it should be

paired with is how do i continue to live

a personally meaningful life as i

undergo treatment

we’ll get back to this question in a bit

for now

the desire to live to extend

clock time is perfectly reasonable

indeed a large part of innovation and

advancement in medical technology

is driven by the impetus to prolonged

lives

but a singular focus on extending clock

time

at all costs is potentially harmful to

us because it could lead us to demand

treatments that cannot cure us

extraordinary life-sustaining treatments

that only prolong the dying process when

death is imminent

and the delay or rejection of pain

management

or palliative care for better quality of

life

at the end of life

in other words a needlessly messy

and painful dying process which not only

breaks the body

but also the spirit every step

of the way

this leads me back to the question how

do i continue to live

a personally meaningful life as i

undergo

treatment

the concept of a personally meaningful

life is tied to the awareness that time

is qualitative too that it is not just

clock time the concept of a qualitative

time is

less familiar to us because we don’t

usually think about it

we live it intuitively we cannot count

it

but its intensity can be felt

paul callanity a doctor by vocation

was passionate about his job and stayed

with it for as long as he was well

enough to do so

describes this intensity of qualitative

time in these words and i quote

two hours can feel like a minute

unquote when you’re doing something

that’s

important to you which you’re passionate

about

you are living life intensely

georgia blaine a language lover and

writer who continued writing for as long

as she was able to

regarding living intensely as keeping

her alive

she tells us and i quote so long as i

continue

spinning these tales i will be spared

i will live to see another day

unquote instead of becoming

fixated on extending clock time at all

costs

kalanithi and blame proactively juggled

their treatment schedule

and doing what’s important to them

in the face of healthcare’s tendency to

speak for the patient

considering what a personally meaningful

life looks like to us

alongside treatment options schedules

and limitations

will allow us will empower us the

patients

to play an active role in our care

in many ways we are all terminal death

is inevitable and dying really shouldn’t

be a taboo subject

studies have shown that avoiding

conversations about preparing for the

end

could lead patients their family members

and even healthcare professionals into a

false dichotomy

that is thinking you only have two

options either you go

all out to save the patients at all

costs

or you simply let the patient die

but there is a third way and that is to

prepare

early by having conversations with your

loved ones on

what does a personally meaningful life

look like to me

in the face of a debilitating illness

based on these conversations in the

events of an illness

fruitful discussions can begin

on treatment options schedules and

limitations that will allow you to live

as much as possible

the rest of your personal story on your

own terms

these conversations about each and every

one of us do not have to happen only as

we are

months or weeks away from death it

should occur throughout

our lives because priorities

change

the answer to the question what is a

personally

meaningful life to me in the face of a

debilitating illness

does not have to be extremely profound

to have

an impact on one’s quality of life at

the end of life

a patient said that it was important to

her

to improve her relationship with her

estranged

daughter and should she lose the

capacity to speak

or to care for herself she didn’t want

pain and she didn’t want to smell

bad between her cancer diagnosis

and her eventual death from the illness

she attended her daughter’s wedding

which she felt gave her the opportunity

to fulfill her role as a mother

and when she slipped into a coma her

healthcare team and loved ones took

extra care to honor her wishes to make

sure that she felt as little pain as

possible

and that she didn’t smell bad

crucially end of life conversations not

only allow us to take stock

regularly of what a personally

meaningful life looks like to us

it also helps prepare our loved ones to

know how best to care for us when we can

no longer speak

for ourselves

like sisyphus and kalanithi and blaine

we all share the capacity to imagine

what a personally meaningful life looks

like to us

if there’s only one message that you

take away from this talk today

i hope it is this start the end of life

conversations with your loved ones today

and in the face of absurdity

never stop imagining sisyphus happy

thank you