BJ Miller: What really matters at the end of life
Bidžej Miler (BJ Miller): Šta je zaista bitno na kraju života
Using empathy and a clear-eyed view of mortality, BJ Miller shines a light on healthcare’s most ignored facet: preparing for death. Full bio
Double-click the English transcript below to play the video.
razlog da se probudimo.
sa proslave Dana zahvalnosti,
were horsing around,
a parked commuter train.
na vagon putničkog voza.
with the wires that run overhead.
sa žicama koje su išle iznad njega.
like a great idea at the time.
u tom trenutku.
and that was that.
i to je bilo to.
with death -- my death --
sa smrću - mojom smrću -
my long run as a patient.
moja dugotrajna uloga pacijenta.
of dysfunction --
a hospice and palliative medicine doc,
i palijativno zbrinjavanje,
who goes into healthcare
ko stupi u zdravstvo
are also unwitting agents
takođe smo nesvesni učesnici
does not serve.
answer to that question,
zapravo je prilično jednostavan
with diseases, not people, at its center.
tako da su u centru bolesti, a ne ljudi.
it was badly designed.
of bad design more heartbreaking
nisu nigde više srceparajući
for good design more compelling
and concentrated.
i koncentrisane.
to reach out across disciplines
da krenem preko više disciplina
into this big conversation.
u ovaj veliki razgovor.
opportunity in front of us,
about death isn't being dead,
u vezi sa smrću nije biti mrtav.
it can be very helpful
može biti korisno
which is necessary as it is,
koja je sama po sebi neophodna
essential part of life, part of the deal,
deo celog paketa
to make space, adjust, grow.
prilagodimo se, rastemo.
to realize forces larger than ourselves.
da postoje sile veće od nas samih.
became fact, fixed --
postao je fiksirana činjenica -
reject this fact than reject myself.
ovu činjenicu koliko ni da odbijam sebe.
but I learned it eventually.
ali na kraju sam to naučio.
about necessary suffering
u vezi sa neophodnom patnjom
i onog koji prima negu -
is where healing happens.
da se ovde dešava lečenje.
as we learned yesterday --
bukvalno je saosećanje to -
on the other hand,
is unnecessary, invented.
since this brand of suffering is made up,
da pošto je ova patnja izmišljena,
something we can affect.
na to kako umiremo.
to this fundamental distinction
na ovu ključnu razliku
and unnecessary suffering
design cues for the day.
zadatka za dizajn danas.
as people who care,
not add to the pile.
a ne da je gomilamo.
palijativna nega,
of a reflective advocate,
poput zastupnika za prisećanje,
important field but poorly understood --
ali često slabo shvaćeno,
limited to end of life care.
nije ograničena samo na to.
and living well at any stage.
u bilo kom dobu života.
have to be dying anytime soon
da ne morate da umrete uskoro
od palijativne nege.
on top of long-standing HIV.
pored dugotrajnog HIV-a.
i izmorenosti,
out loud together about his life --
misleći naglas o njegovom životu,
his losses as they roll in,
sa svojim gubicima kako nastaju,
the next moment.
da upije sledeći trenutak.
but regret, quite another.
dok je žaljenje nešto sasvim drugo.
out of a Norman Rockwell painting --
iz slike Normana Rokvela -
when he came into clinic one day,
kad je jednog dana došao na kliniku
down the Colorado River.
niz reku Kolorado.
and his health, some would say no.
i bezbednost, neki bi rekli da nije.
while he still could.
dok je još mogao.
sjajno putovanje:
scorpions, snakes,
škorpije, zmije,
of the Grand Canyon --
sa vrelih zidova Velikog kanjona -
beyond our control.
koje su van naše kontrole.
so many of us would make,
kakvu bi većina nas donela,
what is best for ourselves over time.
šta je tokom vremena za nas najbolje.
is a shift in perspective.
znači promenu u perspektivi.
kada sam se vratio na fakultet,
when I went back to college,
I'd learn something about how to see --
da ću naučiti nešto o tome kako da gledam,
for a kid who couldn't change
koji nije mogao da promeni
we humans get to play with,
sa kojom se igramo,
at an amazing place in San Francisco
na neverovatnom mestu u San Francisku
that helps with this shift in perspective.
sa ovom promenom u perspektivi.
wheeling the body out through the garden,
i dok guramo telo na kolicima kroz baštu
nurses, volunteers,
medicinske sestre, volonteri,
with flower petals.
to usher in grief with warmth,
slika opraštanja da se bol uvede
in the hospital setting,
u bolničkom okruženju,
lined with tubes and beeping machines
prepunoj cevčica i mašina koje pište
even when the patient's life has.
čak ni kada se ugasi život pacijenta.
the body's whisked away,
telo se na brzinu odnosi
had never really existed.
nikada zapravo nije ni postojala.
in the name of sterility,
u ime sterilnosti,
within those walls is numbness --
unutar tih zidova je obamrlost,
the opposite of aesthetic.
I am alive because of them.
zahvaljujući njima sam živ.
and treatable illness.
i izlečive bolesti.
that's not what they were designed for.
nisu za to smišljena.
giving up on the notion
can become more humane.
u odeljenju za opekotine
in Livingston, New Jersey,
u Nju Džerziju
great care at every turn,
na svakom koraku,
palliative care for my pain.
za moj bol.
complaining about driving through it.
žalile što su morale da voze kroz njega.
coming down all sticky.
kako pada, sav lepljiv.
smuggled in a snowball for me.
za mene prokrijumčarila grudvu.
holding that in my hand,
dok sam je držao u ruci
onto my burning skin;
na moju uzavrelu kožu,
and turn into water.
kako se topi i pretvara u vodu.
in this universe mattered more to me
u ovom univerzumu bilo mi je bitnije
all the inspiration I needed
svu inspiraciju koja mi je bila potrebna
and be OK if I did not.
i da se pomirim sa time ako ne mogu.
I've known many people
poznavao sam mnoge ljude
spremni da umru.
some final peace or transcendence,
ili transcendenciju,
by what their lives had become --
time šta je njihov život postao,
living with chronic and terminal illness,
sa hroničnom ili smrtnom bolešću
or prepared for this silver tsunami.
za ovaj srebrni cunami.
infrastruktura koja može da se izbori
dynamic enough to handle
something new, something vital.
nešto vitalno.
for designers of all stripes to work with.
za sve vrste dizajnera o tome šta da rade.
who are closer to death:
koji su blizu smrti:
and unburdening to those they love;
i da nisu teret svojim voljenima,
of wonderment and spirituality.
čuđenja i duhovnosti.
Doma za stare - projekta Zen
from our residents in subtle detail.
iz suptilnih detalja.
one day to the next due to ALS.
zbog Lu Gerigove bolesti.
while she has them.
dok ih još uvek ima.
at the foot of her bed,
u dnu njenog kreveta,
naspram njene suve kože
coursing through her veins --
koja bi joj tekla venama -
where in a moment, in an instant,
gde u trenutku, momentalno
samo zato što postojimo.
loving our time by way of the senses,
našeg vremena samo kroz čula,
doing the living and the dying.
koja živi i koja umire.
is our kitchen,
je naša kuhinja,
can eat very little, if anything at all.
može da pojede veoma malo, skoro ništa.
sustenance on several levels:
na više nivoa:
happening under our roof,
koje se dešavaju pod našim krovom,
interventions we know of,
intervencija za koju znamo
the possibility of accessing
living and dying with dementia.
koji žive i umiru sa demencijom.
the things we don't have words for,
stvari za koje nemamo reči,
of the system was our first design cue,
izvlačenje nepotrebne patnje iz sistema,
by way of the senses,
the aesthetic realm --
and final bit for today;
i poslednjoj stvari za danas.
to set our sights on well-being,
svoj fokus na dobrostanje,
more wonderful,
da život bude lepši,
između modela brige
or human-centered model of care,
i onog koji se okreće oko pacijenta,
becomes a creative, generative,
čin kreativnosti, stvaranja
highest forms of adaptation.
najviših oblika adaptacije.
it takes to be human.
koji je potreban da budete čovek.
has given rise to architecture.
dala je zamah arhitekturi.
is a necessary part of life,
we take a light approach to dying
da zauzmemo lak pristup umiranju
any particular way of dying.
način da se umre.
that cannot move,
koje ne mogu da se izmeste,
we will all kneel there.
svi ćemo tamo pokleknuti.
to play itself all the way out --
da dozvolimo životu da se potpuno odigra,
getting out of the way,
a process of crescendo through to the end.
proces nalik krešendu sve do kraja.
one way or another.
na ovaj ili onaj način.
around this fact,
oko ove činjenice
a shock of beauty or meaning
šok lepote ili značenje
for a perfect moment,
koja je trajala savršen trenutak
ABOUT THE SPEAKER
BJ Miller - Palliative care physicianUsing empathy and a clear-eyed view of mortality, BJ Miller shines a light on healthcare’s most ignored facet: preparing for death.
Why you should listen
Palliative care specialist BJ Miller helps patients face their own deaths realistically, comfortably, and on their own terms. Miller is cultivating a model for palliative care organizations around the world, and emphasizing healthcare’s quixotic relationship to the inevitability of death. He is a hospice and palliative medicine physician and sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center.
Miller’s passion for palliative care stems from personal experience -- a shock sustained while a Princeton undergraduate cost him three limbs and nearly killed him. But his experiences form the foundation of a hard-won empathy for patients who are running out of time.
BJ Miller | Speaker | TED.com