TED2015
BJ Miller: What really matters at the end of life
BJ‧米勒: 在生命終點，真正重要的是什麼?
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在生命的終點，我們最渴望的是什麼？對許多人而言，只是很簡單的舒適、尊重和愛。BJ‧米勒是個安寧療護醫生，他深入思考如何為他的病患創造有尊嚴、優雅的生命終點。請花點時間品嘗這場動人的談話，裡面探討了我們如何思考死亡和為人生增光的重要議題。
BJ Miller - Palliative care physician
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
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.
00:13
Well, we all need a reason to wake up.
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嗯，我們都需要一個醒來的理由
00:18
For me, it just took 11,000 volts.
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對我而言，只需要1萬1千伏特
00:23
I know you're too polite to ask,
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我知道你們都太有禮貌，不好意思問
00:24
so I will tell you.
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所以直接告訴你們吧
00:27
One night, sophomore year of college,
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在我大學二年級的一個晚上
00:29
just back from Thanksgiving holiday,
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剛從感恩節假期回來
00:33
a few of my friends and I
were horsing around,
were horsing around,
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我們幾個朋友正在四處嬉戲打鬧
00:35
and we decided to climb atop
a parked commuter train.
a parked commuter train.
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我們決定爬上一台停著的通勤列車
00:40
It was just sitting there,
with the wires that run overhead.
with the wires that run overhead.
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它就停在那，電纜線高掛在上面
00:43
Somehow, that seemed
like a great idea at the time.
like a great idea at the time.
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不知怎麼回事，當時感覺這個主意棒透了
00:46
We'd certainly done stupider things.
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但我們肯定是幹了些蠢事
00:50
I scurried up the ladder on the back,
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我快速爬上了背後的梯子
00:53
and when I stood up,
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而當我站上去時
00:55
the electrical current entered my arm,
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電流竄進我的手臂
00:58
blew down and out my feet,
and that was that.
and that was that.
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一路往下竄，從我的雙腳流出，
結果就是現在你們看到的情況
結果就是現在你們看到的情況
01:03
Would you believe that watch still works?
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你們相信手錶竟然還能用嗎?
01:08
Takes a licking!
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遭受重擊 (廣告台詞前半段，後接"仍不懈怠")
01:09
(Laughter)
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(笑聲)
01:10
My father wears it now in solidarity.
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我父親現在仍因為支持而戴著它
01:15
That night began my formal relationship
with death -- my death --
with death -- my death --
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那夜開始了我和死亡的關係
-- 自己的死亡 --
-- 自己的死亡 --
01:21
and it also began
my long run as a patient.
my long run as a patient.
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也同時開啟了我漫長的傷患生涯
01:25
It's a good word.
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傷患 -- 這是個詞語好用
01:26
It means one who suffers.
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意思是遭受痛苦的人
01:28
So I guess we're all patients.
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所以我想我們都算是傷患
01:31
Now, the American health care system
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現在，美國的醫療體系
01:33
has more than its fair share
of dysfunction --
of dysfunction --
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有太多的不良之處
01:37
to match its brilliance, to be sure.
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當然也有好的地方
01:39
I'm a physician now,
a hospice and palliative medicine doc,
a hospice and palliative medicine doc,
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我現在是個醫生，
負責安寧療護和緩和藥物治療
負責安寧療護和緩和藥物治療
01:44
so I've seen care from both sides.
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所以醫生病患兩方的觀點我都看過
01:47
And believe me: almost everyone
who goes into healthcare
who goes into healthcare
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相信我，幾乎所有進入醫療體系的人
01:50
really means well -- I mean, truly.
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都是基於非常良善的意圖 -- 我說真的
01:54
But we who work in it
are also unwitting agents
are also unwitting agents
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但在我們醫療體系裡的人
都不知道這個體系經常運作不良
01:58
for a system that too often
does not serve.
does not serve.
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02:03
Why?
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為什麼?
02:05
Well, there's actually a pretty easy
answer to that question,
answer to that question,
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事實上，這個問題的答案很簡單
02:09
and it explains a lot:
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也解釋了很多事：
02:11
because healthcare was designed
with diseases, not people, at its center.
with diseases, not people, at its center.
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因為醫療系統設計是針對疾病，
而不是病人
而不是病人
02:18
Which is to say, of course,
it was badly designed.
it was badly designed.
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也就是說，必然沒有經過很好的設計
02:22
And nowhere are the effects
of bad design more heartbreaking
of bad design more heartbreaking
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而設計錯誤造成更多傷害
02:28
or the opportunity
for good design more compelling
for good design more compelling
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或是優良設計帶來生命終結前
02:31
than at the end of life,
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的強制醫療
02:33
where things are so distilled
and concentrated.
and concentrated.
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那令事情更淨化和集中
02:38
There are no do-overs.
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再也沒有重新開始的機會
02:42
My purpose today is
to reach out across disciplines
to reach out across disciplines
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我今天希望能向各領域傳達一個訊息
02:46
and invite design thinking
into this big conversation.
into this big conversation.
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邀請大家將設計思維帶入這段重要對談
02:51
That is, to bring intention and creativity
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也就是將良好的意圖和創意
02:56
to the experience of dying.
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帶入死亡的體驗裡
03:01
We have a monumental
opportunity in front of us,
opportunity in front of us,
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在我們面前有極其難得的機會
03:05
before one of the few universal issues
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以個人和公民社會的身分
03:09
as individuals as well as a civil society:
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思考其中一個普遍的議題之前
03:12
to rethink and redesign how it is we die.
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重新思考和設計如何死亡這件事情
03:19
So let's begin at the end.
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所以讓我們從一切的終點開始談起
03:23
For most people, the scariest thing
about death isn't being dead,
about death isn't being dead,
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對大部分的人而言，死亡最恐怖的事
不是變成死人
不是變成死人
03:27
it's dying, suffering.
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而是臨終及遭受痛苦
03:29
It's a key distinction.
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這是個關鍵的區別
03:32
To get underneath this,
it can be very helpful
it can be very helpful
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要處理這件問題，非常效的做法是
03:34
to tease out suffering
which is necessary as it is,
which is necessary as it is,
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將死亡無法避免的痛苦
03:39
from suffering we can change.
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從我們可以改變的痛苦中抽離出來
前者是自然發生的過程，生命的本質，
如同一個談好的條件
如同一個談好的條件
03:42
The former is a natural,
essential part of life, part of the deal,
essential part of life, part of the deal,
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03:47
and to this we are called
to make space, adjust, grow.
to make space, adjust, grow.
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這讓我們為自己預留空間，自我調整、成長
03:55
It can be really good
to realize forces larger than ourselves.
to realize forces larger than ourselves.
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認識比自己強大的力量是件好事
04:01
They bring proportionality,
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它帶來了均衡性
04:04
like a cosmic right-sizing.
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像個全面性的重新調整
04:08
After my limbs were gone,
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舉例來說，在我失去肢體之後
04:11
that loss, for example,
became fact, fixed --
became fact, fixed --
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那種損失變成了事實，無可改變
04:15
necessarily part of my life,
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變成生命中必然的部分
04:19
and I learned that I could no more
reject this fact than reject myself.
reject this fact than reject myself.
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我發現不再拒絕接受這個事實，
因為那等同拒絕自己
因為那等同拒絕自己
04:27
It took me a while,
but I learned it eventually.
but I learned it eventually.
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花了一點時間，但我最後還是發現了
04:30
Now, another great thing
about necessary suffering
about necessary suffering
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這種無可避免的痛苦帶來另一件好事
04:33
is that it is the very thing
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就是它正是
04:36
that unites caregiver and care receiver --
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可以連結醫護照顧者和接受者
04:41
human beings.
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- 也就是人 - 的事
04:45
This, we are finally realizing,
is where healing happens.
is where healing happens.
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我們最後發現，這就是真正的治療
04:49
Yes, compassion -- literally,
as we learned yesterday --
as we learned yesterday --
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是的，同情 -- 如同我們昨天所學到的 --
04:53
suffering together.
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一起受苦
04:56
Now, on the systems side,
on the other hand,
on the other hand,
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至於另一方面 -- 系統這面
05:00
so much of the suffering
is unnecessary, invented.
is unnecessary, invented.
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卻製造了許多不必要的痛苦
05:04
It serves no good purpose.
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沒有絲毫好處
05:06
But the good news is,
since this brand of suffering is made up,
since this brand of suffering is made up,
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但好消息是，既然這是人製造出來的
05:10
well, we can change it.
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那我們就可以改變它
05:13
How we die is indeed
something we can affect.
something we can affect.
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如何死亡肯定是我們能影響的事
05:18
Making the system sensitive
to this fundamental distinction
to this fundamental distinction
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讓整個系統對於必要和非必要痛苦
05:22
between necessary
and unnecessary suffering
and unnecessary suffering
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之間的區隔更加靈敏
05:25
gives us our first of three
design cues for the day.
design cues for the day.
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這給了我們三個設計暗示中的第一個
05:30
After all, our role as caregivers,
as people who care,
as people who care,
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追根究柢，
我們醫護照顧者的角色
我們醫護照顧者的角色
05:34
is to relieve suffering --
not add to the pile.
not add to the pile.
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是為了要緩和痛苦，不是雪上加霜
05:42
True to the tenets of palliative care,
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這是慢性治療的宗旨
05:44
I function as something
of a reflective advocate,
of a reflective advocate,
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我代表了典型支持者
05:47
as much as prescribing physician.
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差不多是一位規定內科醫師
05:51
Quick aside: palliative care -- a very
important field but poorly understood --
important field but poorly understood --
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順道快速說明：慢性治療是個重要領域
但其實沒有正確地被理解
但其實沒有正確地被理解
05:57
while it includes, it is not
limited to end of life care.
limited to end of life care.
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它涵蓋範圍不是止於生命結束
06:00
It is not limited to hospice.
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也不止於安寧療護
06:02
It's simply about comfort
and living well at any stage.
and living well at any stage.
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它純粹是讓病患在任何階段
都能舒適地好好活著
都能舒適地好好活著
06:06
So please know that you don't
have to be dying anytime soon
have to be dying anytime soon
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所以你不是在快要死去的時候
06:10
to benefit from palliative care.
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才能從慢性治療中得到好處
06:13
Now, let me introduce you to Frank.
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現在，讓我為你們介紹法蘭克
06:17
Sort of makes this point.
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他可說是印證了這件事
06:19
I've been seeing Frank now for years.
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我照顧了法蘭克好些年了
06:21
He's living with advancing prostate cancer
on top of long-standing HIV.
on top of long-standing HIV.
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他一直與前列腺癌
和愛滋病毒為吾
和愛滋病毒為吾
06:26
We work on his bone pain and his fatigue,
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我們針對他的骨痛和疲勞問題進行診療
06:28
but most of the time we spend thinking
out loud together about his life --
out loud together about his life --
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但大部分的時間其實花在
一起思考他的人生
一起思考他的人生
06:32
really, about our lives.
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-- 真的，關於我們的人生
06:35
In this way, Frank grieves.
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這麼做讓法蘭克更悲傷
06:37
In this way, he keeps up with
his losses as they roll in,
his losses as they roll in,
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因為不斷面對失去，
讓他一直處於喪去之中
讓他一直處於喪去之中
06:41
so that he's ready to take in
the next moment.
the next moment.
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所以他決定要朝下一刻邁進
06:45
Loss is one thing,
but regret, quite another.
but regret, quite another.
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失去是一回事，但後悔是另一回事
06:51
Frank has always been an adventurer --
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法蘭克一直是個冒險家
06:53
he looks like something
out of a Norman Rockwell painting --
out of a Norman Rockwell painting --
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他看來不是諾曼‧洛克威爾畫作裡的人物
06:56
and no fan of regret.
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和從不會後悔
06:58
So it wasn't surprising
when he came into clinic one day,
when he came into clinic one day,
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所以當他某天跑進診所說
07:01
saying he wanted to raft
down the Colorado River.
down the Colorado River.
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他想扒木筏到科羅拉多河去的時候，
一點也不令人意外
一點也不令人意外
07:05
Was this a good idea?
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那是個好主意嗎?
07:07
With all the risks to his safety
and his health, some would say no.
and his health, some would say no.
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以他人生安全和健康狀況做評估，
一些人或許會說不是
一些人或許會說不是
07:11
Many did, but he went for it,
while he still could.
while he still could.
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很多人則說是，但他去了，
趁他還能辦到的時候
趁他還能辦到的時候
07:15
It was a glorious, marvelous trip:
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那是個美妙而非凡的旅程：
07:20
freezing water, blistering dry heat,
scorpions, snakes,
scorpions, snakes,
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冰凍的水、極度乾熱、蠍子、蛇
07:26
wildlife howling off the flaming walls
of the Grand Canyon --
of the Grand Canyon --
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大峽谷火焰般的崖壁中
不斷傳來野生動物的咆哮
不斷傳來野生動物的咆哮
07:31
all the glorious side of the world
beyond our control.
beyond our control.
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超越我們控制的，世界壯麗的一面
07:36
Frank's decision, while maybe dramatic,
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法蘭克的決定，可能有點戲劇性
07:38
is exactly the kind
so many of us would make,
so many of us would make,
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但確實是我們許多人會做的那種決定
07:40
if we only had the support to figure out
what is best for ourselves over time.
what is best for ourselves over time.
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如果我們只堅持一些永遠
對我們都是最好的決定
對我們都是最好的決定
07:49
So much of what we're talking about today
is a shift in perspective.
is a shift in perspective.
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那麼今天我們談的，主要是觀點的移轉
07:54
After my accident,
when I went back to college,
when I went back to college,
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在意外發生後，當我回到大學時
07:56
I changed my major to art history.
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我將主修改為藝術史
08:00
Studying visual art, I figured
I'd learn something about how to see --
I'd learn something about how to see --
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透過研究視覺藝術，
我發現我學到一些如何「看」--
我發現我學到一些如何「看」--
對一個無法改變太多過去
所見的孩子而言
所見的孩子而言
08:05
a really potent lesson
for a kid who couldn't change
for a kid who couldn't change
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這是非常強而有力的一課
08:09
so much of what he was seeing.
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08:12
Perspective, that kind of alchemy
we humans get to play with,
we humans get to play with,
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觀點 -- 這種人類可以控制的鍊金術
08:16
turning anguish into a flower.
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足以將痛苦轉換為一朵盛開的花
08:21
Flash forward: now I work
at an amazing place in San Francisco
at an amazing place in San Francisco
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往前快轉：現在我在舊金山
一個很棒的地方工作
一個很棒的地方工作
08:25
called the Zen Hospice Project,
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叫做《禪安寧照護計畫》
08:28
where we have a little ritual
that helps with this shift in perspective.
that helps with this shift in perspective.
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在那裡我們有一個幫助這種
觀點移轉的小小儀式
觀點移轉的小小儀式
08:32
When one of our residents dies,
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當我們有一位房客過世
08:35
the mortuary men come, and as we're
wheeling the body out through the garden,
wheeling the body out through the garden,
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太平間的人來了，而當我們將遺體穿過花園
08:39
heading for the gate, we pause.
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朝大門前進時，會先暫停一下
08:42
Anyone who wants --
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任何人，只要他想要 --
08:44
fellow residents, family,
nurses, volunteers,
nurses, volunteers,
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不管是其他房客、家屬、護士、義工
08:46
the hearse drivers too, now --
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還有靈車司機 --
08:49
shares a story or a song or silence,
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都可以分享一個故事、唱一首歌，
或者單純的靜默
或者單純的靜默
08:53
as we sprinkle the body
with flower petals.
with flower petals.
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就在我們在遺體上撒花瓣時
08:57
It takes a few minutes;
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這會花幾分鐘的時間
08:59
it's a sweet, simple parting image
to usher in grief with warmth,
to usher in grief with warmth,
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這是個甜蜜而簡單的告別象徵，
用溫暖迎接悲痛
用溫暖迎接悲痛
09:04
rather than repugnance.
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而不是厭惡
09:08
Contrast that with the typical experience
in the hospital setting,
in the hospital setting,
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對比於醫院裡設定的典型體驗
09:13
much like this -- floodlit room
lined with tubes and beeping machines
lined with tubes and beeping machines
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差不多像這樣 -- 泛光照射的房間裡
排滿管線和嗶嗶叫的機器
排滿管線和嗶嗶叫的機器
09:18
and blinking lights that don't stop
even when the patient's life has.
even when the patient's life has.
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病患死亡時仍不停閃爍的燈光
09:23
Cleaning crew swoops in,
the body's whisked away,
the body's whisked away,
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清潔人員衝進房間，快速搬走遺體
09:26
and it all feels as though that person
had never really existed.
had never really existed.
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一切感覺就像這個人不曾真的存在過
09:33
Well-intended, of course,
in the name of sterility,
in the name of sterility,
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無菌考量，當然是個良好意圖
09:35
but hospitals tend to assault our senses,
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但醫院很容易侵犯我們的感官
09:39
and the most we might hope for
within those walls is numbness --
within those walls is numbness --
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在那些生冷的牆壁裡
我們最多能渴望的大概就是麻木
我們最多能渴望的大概就是麻木
09:44
anesthetic, literally
the opposite of aesthetic.
the opposite of aesthetic.
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麻木不仁，跟美完全相反
09:50
I revere hospitals for what they can do;
I am alive because of them.
I am alive because of them.
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我為醫院能做到的事情尊敬他們；
他們是我還活著的原因
他們是我還活著的原因
09:56
But we ask too much of our hospitals.
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但我們對他們的要求太多了
09:59
They are places for acute trauma
and treatable illness.
and treatable illness.
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他們是處理急性創傷和可治癒疾病的地方
10:03
They are no place to live and die;
that's not what they were designed for.
that's not what they were designed for.
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而不是處理生死的地方；
他們不是為此設計的
他們不是為此設計的
10:10
Now mind you -- I am not
giving up on the notion
giving up on the notion
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現在提醒各位 -- 我並沒有放棄
10:12
that our institutions
can become more humane.
can become more humane.
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我們的醫療機構需要更人性化的想法
10:16
Beauty can be found anywhere.
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美好的事物隨處可見
10:21
I spent a few months in a burn unit
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我在燒燙中心裡待了幾個月
10:23
at St. Barnabas Hospital
in Livingston, New Jersey,
in Livingston, New Jersey,
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在紐澤西利文斯頓的聖巴拿巴醫院裡
10:26
where I got really
great care at every turn,
great care at every turn,
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在那裡我每次都受到很好的照顧
10:30
including good
palliative care for my pain.
palliative care for my pain.
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包含針對疼痛所做的慢性治療
10:33
And one night, it began to snow outside.
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在一個晚上，外面開始下雪
10:37
I remember my nurses
complaining about driving through it.
complaining about driving through it.
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我記得護士們正在抱怨要開車穿越雪地
10:42
And there was no window in my room,
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我的房間沒有窗戶
10:44
but it was great to just imagine it
coming down all sticky.
coming down all sticky.
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但光是想像濕軟的雪花落下也很不錯
10:49
Next day, one of my nurses
smuggled in a snowball for me.
smuggled in a snowball for me.
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隔天，其中一個護士
為我偷偷帶進了一個雪球
為我偷偷帶進了一個雪球
10:53
She brought it in to the unit.
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她將雪球帶進燒燙中心
10:56
I cannot tell you the rapture I felt
holding that in my hand,
holding that in my hand,
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我無法形容那種歡天喜地的感覺，
就當我感受到它就在我手中
就當我感受到它就在我手中
11:02
and the coldness dripping
onto my burning skin;
onto my burning skin;
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一股股濕冷滴落在我滾燙的皮膚上
11:05
the miracle of it all,
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那一切奇蹟似的感受
11:07
the fascination as I watched it melt
and turn into water.
and turn into water.
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當我看著它融化為水的那種陶醉
11:15
In that moment,
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在那個時刻
11:17
just being any part of this planet
in this universe mattered more to me
in this universe mattered more to me
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感覺自己屬於這個世界、這個宇宙的任何部分
11:21
than whether I lived or died.
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對我而言，比會活下來還是死掉重要
11:24
That little snowball packed
all the inspiration I needed
all the inspiration I needed
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這顆小小雪球給了我需要的所有激勵
11:27
to both try to live
and be OK if I did not.
and be OK if I did not.
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無論是試著活下來還是接受死亡
11:31
In a hospital, that's a stolen moment.
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在醫院裡，那段是被偷走的時刻
11:36
In my work over the years,
I've known many people
I've known many people
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在我多年的工作裡，認識了許多
11:39
who were ready to go, ready to die.
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準備離開、準備好死亡的人
11:43
Not because they had found
some final peace or transcendence,
some final peace or transcendence,
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並非找到最後的安寧或超然
11:47
but because they were so repulsed
by what their lives had become --
by what their lives had become --
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而是被他們生命最終變成的樣貌給擊敗
11:54
in a word, cut off, or ugly.
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一言以蔽之，隔絕, 醜陋
12:03
There are already record numbers of us
living with chronic and terminal illness,
living with chronic and terminal illness,
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活在長期病痛或絕症中的人數
已經達到歷史新高
已經達到歷史新高
12:09
and into ever older age.
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年齡也不斷攀升
12:11
And we are nowhere near ready
or prepared for this silver tsunami.
or prepared for this silver tsunami.
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我們完全還沒為這個銀色海嘯做好準備
12:19
We need an infrastructure
dynamic enough to handle
dynamic enough to handle
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我們需要建立基礎設施
有足夠的動力應付這股
人口結構轉移的震盪
人口結構轉移的震盪
12:22
these seismic shifts in our population.
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12:27
Now is the time to create
something new, something vital.
something new, something vital.
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現在正是時候創造一些全新的、
不可或缺的東西
不可或缺的東西
12:30
I know we can because we have to.
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我知道我們可以，因為我們必須這麼做
12:33
The alternative is just unacceptable.
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沒有其他選擇
12:35
And the key ingredients are known:
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而廣為人知的重要要素有：
12:37
policy, education and training,
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政策、教育和訓練
12:41
systems, bricks and mortar.
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系統、建築物
12:44
We have tons of input
for designers of all stripes to work with.
for designers of all stripes to work with.
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我們有以頓計的訊息
可讓各種不同的設計師進行作業
可讓各種不同的設計師進行作業
12:49
We know, for example, from research
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舉例來說，從研究中得知
12:51
what's most important to people
who are closer to death:
who are closer to death:
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對接近死亡的人們而言，最重要的是：
12:54
comfort; feeling unburdened
and unburdening to those they love;
and unburdening to those they love;
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舒適；感覺沒有牽掛，
並不再牽累他們所愛的人
並不再牽累他們所愛的人
13:01
existential peace; and a sense
of wonderment and spirituality.
of wonderment and spirituality.
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心境平靜，感覺美妙和充滿靈性
13:08
Over Zen Hospice's nearly 30 years,
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在《禪安寧療護》的近30年裡
13:12
we've learned much more
from our residents in subtle detail.
from our residents in subtle detail.
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我們從房客一些細微的瑣事中學到許多
13:17
Little things aren't so little.
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這些小事其實不小
13:21
Take Janette.
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就拿珍妮特來說
13:22
She finds it harder to breathe
one day to the next due to ALS.
one day to the next due to ALS.
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由於患有漸凍人症(ALS)，
她發現一天比一天難以呼吸
她發現一天比一天難以呼吸
13:26
Well, guess what?
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猜猜怎麼樣?
13:28
She wants to start smoking again --
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她想要再次開始抽菸
13:31
and French cigarettes, if you please.
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而且是法國菸，如果可以的話
13:36
Not out of some self-destructive bent,
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並不是因為她有自我毀滅的傾向
13:39
but to feel her lungs filled
while she has them.
while she has them.
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而是想在她失去她的肺之前，
感覺裡面被充滿
感覺裡面被充滿
13:44
Priorities change.
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優先次序有所不同了
13:47
Or Kate -- she just wants to know
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或是凱特 -- 她只想知道
13:50
her dog Austin is lying
at the foot of her bed,
at the foot of her bed,
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她的狗奧斯丁是否躺在床尾
13:54
his cold muzzle against her dry skin,
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用冷冷的口鼻貼在她乾燥的皮膚上
13:57
instead of more chemotherapy
coursing through her veins --
coursing through her veins --
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而不是更多化療的液體在靜脈裡流竄
14:00
she's done that.
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1181
那些她經歷過了
14:02
Sensuous, aesthetic gratification,
where in a moment, in an instant,
where in a moment, in an instant,
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感官與美的滿足，在那一刻
立即變成我們活著的獎勵
14:07
we are rewarded for just being.
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14:15
So much of it comes down to
loving our time by way of the senses,
loving our time by way of the senses,
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我們能用來珍愛剩餘時間的方式，
最終大多只剩下感官
最終大多只剩下感官
14:19
by way of the body -- the very thing
doing the living and the dying.
doing the living and the dying.
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或者身體 --
千真萬確經歷活著和死亡的東西
千真萬確經歷活著和死亡的東西
14:26
Probably the most poignant room
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《禪安寧療護》的客房裡
14:27
in the Zen Hospice guest house
is our kitchen,
is our kitchen,
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氣味最濃烈的地方大概就是廚房了
14:30
which is a little strange when you realize
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這有點奇怪，如果你發現
14:32
that so many of our residents
can eat very little, if anything at all.
can eat very little, if anything at all.
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我們許多房客就算能進食，也非常少量
14:36
But we realize we are providing
sustenance on several levels:
sustenance on several levels:
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但我們意識到，其實在許多層面上
我們都在提供維持生計的東西
我們都在提供維持生計的東西
14:41
smell, a symbolic plane.
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例如氣味，非常象徵性的層面
14:46
Seriously, with all the heavy-duty stuff
happening under our roof,
happening under our roof,
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說認真的，在我們的許多重責大任之中
14:51
one of the most tried and true
interventions we know of,
interventions we know of,
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其中一項最常用、最真切的治療方式
14:55
is to bake cookies.
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就是烘焙餅乾
15:10
As long as we have our senses --
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只要我們還擁有感官 --
15:11
even just one --
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儘管只有任何一種 --
15:13
we have at least
the possibility of accessing
the possibility of accessing
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就至少還有機會接近
15:17
what makes us feel human, connected.
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感覺自己還像個人、和世界連結
15:22
Imagine the ripples of this notion
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想像一下這個觀點的效應：
15:25
for the millions of people
living and dying with dementia.
living and dying with dementia.
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幾百萬人在失智症中經歷生死的轉換
15:29
Primal sensorial delights that say
the things we don't have words for,
the things we don't have words for,
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最原始的感官上的愉悅，
說明了我們無法形容的事
說明了我們無法形容的事
15:33
impulses that make us stay present --
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一股讓我們把注意力放在現在的衝動
15:36
no need for a past or a future.
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無需在意過去或未來
15:42
So, if teasing unnecessary suffering out
of the system was our first design cue,
of the system was our first design cue,
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所以，如果把不必要的痛苦
從醫療體系中抽離是第一個設計提示
從醫療體系中抽離是第一個設計提示
15:50
then tending to dignity
by way of the senses,
by way of the senses,
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那麼在感官上、身體上顧到人們的尊嚴
15:53
by way of the body --
the aesthetic realm --
the aesthetic realm --
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-- 達到美的境界 --
15:57
is design cue number two.
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則是我們的第二個設計提示
15:59
Now this gets us quickly to the third
and final bit for today;
and final bit for today;
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這也快速帶到了第三個設計提示，
也是今天最後一個段落
也是今天最後一個段落
16:03
namely, we need to lift our sights,
to set our sights on well-being,
to set our sights on well-being,
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也就是，我們需要提高眼界，
將其放在人們的福祉上
將其放在人們的福祉上
16:10
so that life and health and healthcare
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那麼生命健康和醫療照護
16:13
can become about making life
more wonderful,
more wonderful,
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就能變成讓生命更美好
16:16
rather than just less horrible.
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而不是比較不恐怖
16:20
Beneficence.
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一種慈善
16:22
Here, this gets right at the distinction
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這會是以疾病為核心和以人為核心
16:25
between a disease-centered and a patient-
or human-centered model of care,
or human-centered model of care,
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兩種醫療模式之間的區別
16:30
and here is where caring
becomes a creative, generative,
becomes a creative, generative,
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3461
也會讓醫療變成一種有創意、有生產力
16:33
even playful act.
251
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甚至好玩的實踐
16:36
"Play" may sound like a funny word here.
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「玩」這個聽起來像個有趣的詞語
16:39
But it is also one of our
highest forms of adaptation.
highest forms of adaptation.
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但它也是適應的一種最高境界
16:42
Consider every major compulsory effort
it takes to be human.
it takes to be human.
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想想人類所有不可或缺的創作成果
16:47
The need for food has birthed cuisine.
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2503
我們對食物的需求催生了料理
16:49
The need for shelter
has given rise to architecture.
has given rise to architecture.
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2588
對遮風避雨的需求造成了建築
16:52
The need for cover, fashion.
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2206
對遮蔽身體的需求帶來時尚
16:54
And for being subjected to the clock,
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2731
而因為備受時間的摧殘
16:57
well, we invented music.
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3527
我們發明了音樂
17:03
So, since dying
is a necessary part of life,
is a necessary part of life,
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所以，既然死亡是生命中必然的部分
17:06
what might we create with this fact?
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我們能為它創造什麼呢?
17:12
By "play" I am in no way suggesting
we take a light approach to dying
we take a light approach to dying
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我所謂「好玩」，並不是建議我們
選個輕快有趣的方式死亡
選個輕快有趣的方式死亡
17:15
or that we mandate
any particular way of dying.
any particular way of dying.
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或是指定某種特定的死亡方式
17:18
There are mountains of sorrow
that cannot move,
that cannot move,
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有許多的悲傷是我們無法挪走的
17:20
and one way or another,
we will all kneel there.
we will all kneel there.
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無倫如何，我們都得向它屈服
17:24
Rather, I am asking that we make space --
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相反地，我是希望大家給它一點空間 --
17:28
physical, psychic room, to allow life
to play itself all the way out --
to play itself all the way out --
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實體和心靈上的空間，
讓生命可以自己一路享受到最後
讓生命可以自己一路享受到最後
17:34
so that rather than just
getting out of the way,
getting out of the way,
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而不是就這樣被拖離
17:37
aging and dying can become
a process of crescendo through to the end.
a process of crescendo through to the end.
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老化和臨終可以變成一段
漸強直至高潮的旋律
漸強直至高潮的旋律
17:44
We can't solve for death.
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我們無法終結死亡
17:50
I know some of you are working on this.
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我知道你們有些人正在嘗試
17:52
(Laughter)
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(笑聲)
但這麼做的同時，我們還可以--
17:57
Meanwhile, we can --
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(笑聲)
17:58
(Laughter)
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18:00
We can design towards it.
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我們還是可以針對死亡進行設計
18:04
Parts of me died early on,
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早些年，部分的我已經死去
18:05
and that's something we can all say
one way or another.
one way or another.
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--不管怎樣，我們都可以這麼說--
18:08
I got to redesign my life
around this fact,
around this fact,
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而我需要針對這個事實
重新設計我的生命
重新設計我的生命
18:11
and I tell you it has been a liberation
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告訴你們，那是個解放
18:14
to realize you can always find
a shock of beauty or meaning
a shock of beauty or meaning
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當你意識到，
你永遠能在留下的生命裡
你永遠能在留下的生命裡
18:17
in what life you have left,
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找到美好事物與意義的驚喜
18:20
like that snowball lasting
for a perfect moment,
for a perfect moment,
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就像那顆雪球存在的完美時刻
18:22
all the while melting away.
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還有整個它融化的時刻
18:26
If we love such moments ferociously,
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如果我們能熱愛這樣的時刻
18:32
then maybe we can learn to live well --
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或許我們就能學會活得精彩--
18:35
not in spite of death,
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不是無視死亡所以活得精采
18:37
but because of it.
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而是因為死亡而活得精彩
18:42
Let death be what takes us,
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讓死亡成為可以引領我們
18:44
not lack of imagination.
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而非不去想像的東西
18:48
Thank you.
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謝謝各位
18:50
(Applause)
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(掌聲)
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