BJ Miller: What really matters at the end of life
Bj Miller: Mis on elu lõpus oluline
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.
et küsida.
ülikooli teisel aastal,
tänupühade tähistamiselt,
were horsing around,
a parked commuter train.
reisirongi katusele.
with the wires that run overhead.
ja selle kohal rippusid juhtmed.
like a great idea at the time.
rumalamaid asju teinud.
olevast redelist üles
and that was that.
ning oligi kõik.
et mu kell töötab ikka veel?
with death -- my death --
minu enda surmaga
my long run as a patient.
kes kannatab.
of dysfunction --
ilmselgetele eelistele.
a hospice and palliative medicine doc,
hospiitsides palliatiivse meditsiini alal.
hoolekande erinevaid tahke.
who goes into healthcare
kes hakkab tegelema tervishoiuga
are also unwitting agents
oleme tihti tahtmatud esindajad
does not serve.
answer to that question,
üsna lihtne vastus
with diseases, not people, at its center.
haigused, mitte inimesed.
it was badly designed.
et süsteem ei ole läbi mõeldud.
of bad design more heartbreaking
puudujäägid südantlõhestavamad
for good design more compelling
parandamiseks põletavamad,
and concentrated.
ja kontsentreeritud.
to reach out across disciplines
leida kontakt teiste teadusharudega,
into this big conversation.
loovat mõtlemist.
opportunity in front of us,
kuidas me sureme.
about death isn't being dead,
surm surnud olemist,
it can be very helpful
which is necessary as it is,
essential part of life, part of the deal,
paratamatu osa
to make space, adjust, grow.
toime tulema ja kohanema.
to realize forces larger than ourselves.
endast suuremat.
became fact, fixed --
reject this fact than reject myself.
tõrjuda, nagu ma ei saa tõrjuda iseennast.
but I learned it eventually.
et sellest aru saada.
about necessary suffering
vältimatu kannatuse juures
hoolealuse vahel,
is where healing happens.
as we learned yesterday --
nagu me eile juba kuulsime,
on the other hand,
seisukohalt vaadatuna
is unnecessary, invented.
süsteemi enda poolt loodud.
since this brand of suffering is made up,
need kannatused on inimese poolt loodud,
something we can affect.
kuidas me sureme.
to this fundamental distinction
et oleks võimalik teha vahet
and unnecessary suffering
design cues for the day.
mis aitavad probleemile lahendust leida.
as people who care,
not add to the pile.
of a reflective advocate,
important field but poorly understood --
on oluline, kuid tihti vääriti mõistetud
limited to end of life care.
surmale eelnevat hoolekannet.
and living well at any stage.
elu ükskõik millises etapis.
have to be dying anytime soon
palliatiivsest ravist.
on top of long-standing HIV.
lisaks pikalt põetud HIV-le.
out loud together about his life --
tema elu üle mõtiskledes,
his losses as they roll in,
the next moment.
oma eluga edasi liikuma.
but regret, quite another.
hoopis teine asi on kahetsus.
out of a Norman Rockwell painting --
maalilt välja hüpanud
when he came into clinic one day,
ühel päeval kliinikusse saabudes
down the Colorado River.
kärestikel sõita.
and his health, some would say no.
tervisele, ütleksid paljud, et ei ole.
while he still could.
kuni tal selleks veel jõudu oli.
scorpions, snakes,
skorpionid, maod,
of the Grand Canyon --
leegitsevpunastelt seintelt,
beyond our control.
maailma ilu.
so many of us would make,
mida teeks paljud meist,
what is best for ourselves over time.
jooksul teada saada, mis on meile parim.
is a shift in perspective.
seisab perspektiivimuutuse taga.
when I went back to college,
kooli naasesin,
kunstiajalugu õppima
I'd learn something about how to see --
et õpin, kuidas midagi näha,
for a kid who couldn't change
sest ma ei saanud muuta seda,
we humans get to play with,
millega on võimalik mängida
kannatusest kaunis õis.
at an amazing place in San Francisco
ma San Fransiscos ühes imelises kohas,
that helps with this shift in perspective.
muutmiseks oma väike rituaal.
wheeling the body out through the garden,
kui me surnukeha aia kaudu välja viime
teeme me pausi.
nurses, volunteers,
haiglaõed või vabatahtlikud
või olla vaikuses
with flower petals.
lilleõitega üle puistame.
to usher in grief with warmth,
mis seob leina soojuse,
in the hospital setting,
saadava kogemusega,
lined with tubes and beeping machines
täis juhtmeid ja piiksuvaid masinaid
even when the patient's life has.
siis, kui patsiendi eluküünal kustunud on.
the body's whisked away,
lahkunud viiakse minema
had never really existed.
nagu seda inimest polekski olemas olnud.
in the name of sterility,
et säilitada steriilsust,
rünnata meie meeli
within those walls is numbness --
on selline tuimus,
the opposite of aesthetic.
kuid mis ei ole kindlasti kunagi kaunis.
I am alive because of them.
ma olen ise tänu nendele elus.
haiglatelt liiga palju.
and treatable illness.
ja ravitavate haiguste jaoks.
that's not what they were designed for.
surra, sest need ei ole selleks mõeldud.
giving up on the notion
can become more humane.
tulevikus olla inimlikumad.
kuud põletusosakonnas
in Livingston, New Jersey,
great care at every turn,
sammul suurepäraselt hoolt ning
palliative care for my pain.
õues lund sadama
complaining about driving through it.
et peavad läbi tuisu sõitma.
coming down all sticky.
kuidas lumi räitsakatena langeb.
smuggled in a snowball for me.
mulle salaja lumepalli.
holding that in my hand,
mida ma tundsin seda käes hoides,
onto my burning skin;
and turn into water.
ja veeks muutumas.
in this universe mattered more to me
osaks olemine
jään ellu või suren.
all the inspiration I needed
inspiratsioon, mida ma vajasin,
and be OK if I did not.
leppida surmaga.
I've known many people
olen ma näinud mitmeid inimesi,
some final peace or transcendence,
lõpuks leppinud või rahu leidnud,
by what their lives had become --
tekitas neis jälestust -
maailmast ära lõigatud.
living with chronic and terminal illness,
kroonilise ja surmava haigusega
or prepared for this silver tsunami.
jaoks absoluutselt valmis.
dynamic enough to handle
infrastruktuuri, et tulla toime
meie rahvastiku hulgas.
something new, something vital.
mis on eluks vajalik.
sest me peame suutma.
for designers of all stripes to work with.
tohutult palju ülesandeid.
who are closer to death:
kõige tähtsam:
and unburdening to those they love;
ja et nende lähedastel ei ole koormat,
of wonderment and spirituality.
imetluse ja spirituaalsuse tundmine.
from our residents in subtle detail.
veelgi enam õppinud.
üldsegi nii väikesed.
one day to the next due to ALS.
aina raskem hingata.
while she has them.
kuni tal veel kopsud on.
Ta tahab lihtsalt olla kindel,
at the foot of her bed,
ta voodijalutsis
ta kuiva naha vastas
coursing through her veins --
where in a moment, in an instant,
võimaldab hetkeks
loving our time by way of the senses,
meile antud aega oma meelte abil,
doing the living and the dying.
mis elab ja sureb.
is our kitchen,
on meie köök,
kui mõelda sellele,
can eat very little, if anything at all.
väga vähe või üldse mitte.
sustenance on several levels:
ka teistele meeltele,
happening under our roof,
mis külalistemajas tekivad,
interventions we know of,
the possibility of accessing
inimestena tundma.
living and dying with dementia.
the things we don't have words for,
väljendavad asju, milleks meil sõnu pole,
of the system was our first design cue,
eemaldada sealt ebavajalik kannatamine,
by way of the senses,
the aesthetic realm --
and final bit for today;
viimase mooduse juurde
to set our sights on well-being,
oma pilgud heaolu suunas nii,
more wonderful,
et teha elu rohkem imetabaseks,
or human-centered model of care,
hoolekande vahel
becomes a creative, generative,
loominguline, edasiviiv ja
kontekstis imelik.
highest forms of adaptation.
tõhusamaid kohanemise viise.
it takes to be human.
mis käivad inimeseks olemisega kaasas.
tekkinud kokakunst.
has given rise to architecture.
ekkinud arhitektuur.
sündis jällegi mood.
is a necessary part of life,
elu lahutamatu osa,
tekitada suudame?
we take a light approach to dying
surma kergekäeliselt suhtuda
any particular way of dying.
siit ilmast lahkumiseks.
that cannot move,
we will all kneel there.
kunagi igaüheni meist.
to play itself all the way out --
orgaaniliselt lõpuni kulgeda nii,
getting out of the way,
a process of crescendo through to the end.
kui tugev lõpunoot meie elule.
seda kaunimaks muuta.
one way or another.
saab öelda iga inimene.
around this fact,
saanud oma elu muuta
a shock of beauty or meaning
või tähenduslikkust on võimalik leida
for a perfect moment,
mis oli hetkeks mu käes
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