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