What really matters at the end of life | BJ Miller | TED

譯者: Allen Kuo 審譯者: Sharon Loh

Well, we all need a reason to wake up.

嗯，我們都需要一個醒來的理由

For me, it just took 11,000 volts.

對我而言，只需要1萬1千伏特

I know you're too polite to ask,

我知道你們都太有禮貌，不好意思問

so I will tell you.

所以直接告訴你們吧

One night, sophomore year of college,

在我大學二年級的一個晚上

just back from Thanksgiving holiday,

剛從感恩節假期回來

a few of my friends and I were horsing around,

我們幾個朋友正在四處嬉戲打鬧

and we decided to climb atop a parked commuter train.

我們決定爬上一台停著的通勤列車

It was just sitting there, with the wires that run overhead.

它就停在那，電纜線高掛在上面

Somehow, that seemed like a great idea at the time.

不知怎麼回事，當時感覺這個主意棒透了

We'd certainly done stupider things.

但我們肯定是幹了些蠢事

I scurried up the ladder on the back,

我快速爬上了背後的梯子

and when I stood up,

而當我站上去時

the electrical current entered my arm,

電流竄進我的手臂

blew down and out my feet, and that was that.

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

Would you believe that watch still works?

你們相信手錶竟然還能用嗎?

Takes a licking!

遭受重擊 (廣告台詞前半段，後接"仍不懈怠")

(Laughter)

(笑聲)

My father wears it now in solidarity.

我父親現在仍因為支持而戴著它

That night began my formal relationship with death -- my death --

那夜開始了我和死亡的關係 -- 自己的死亡 --

and it also began my long run as a patient.

也同時開啟了我漫長的傷患生涯

It's a good word.

傷患 -- 這是個詞語好用

It means one who suffers.

意思是遭受痛苦的人

So I guess we're all patients.

所以我想我們都算是傷患

Now, the American health care system

現在，美國的醫療體系

has more than its fair share of dysfunction --

有太多的不良之處

to match its brilliance, to be sure.

當然也有好的地方

I'm a physician now, a hospice and palliative medicine doc,

我現在是個醫生， 負責安寧療護和緩和藥物治療

so I've seen care from both sides.

所以醫生病患兩方的觀點我都看過

And believe me: almost everyone who goes into healthcare

相信我，幾乎所有進入醫療體系的人

really means well -- I mean, truly.

都是基於非常良善的意圖 -- 我說真的

But we who work in it are also unwitting agents

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

for a system that too often does not serve.

Why?

為什麼?

Well, there's actually a pretty easy answer to that question,

事實上，這個問題的答案很簡單

and it explains a lot:

也解釋了很多事：

because healthcare was designed with diseases, not people, at its center.

因為醫療系統設計是針對疾病， 而不是病人

Which is to say, of course, it was badly designed.

也就是說，必然沒有經過很好的設計

And nowhere are the effects of bad design more heartbreaking

而設計錯誤造成更多傷害

or the opportunity for good design more compelling

或是優良設計帶來生命終結前

than at the end of life,

的強制醫療

where things are so distilled and concentrated.

那令事情更淨化和集中

There are no do-overs.

再也沒有重新開始的機會

My purpose today is to reach out across disciplines

我今天希望能向各領域傳達一個訊息

and invite design thinking into this big conversation.

邀請大家將設計思維帶入這段重要對談

That is, to bring intention and creativity

也就是將良好的意圖和創意

to the experience of dying.

帶入死亡的體驗裡

We have a monumental opportunity in front of us,

在我們面前有極其難得的機會

before one of the few universal issues

以個人和公民社會的身分

as individuals as well as a civil society:

思考其中一個普遍的議題之前

to rethink and redesign how it is we die.

重新思考和設計如何死亡這件事情

So let's begin at the end.

所以讓我們從一切的終點開始談起

For most people, the scariest thing about death isn't being dead,

對大部分的人而言，死亡最恐怖的事 不是變成死人

it's dying, suffering.

而是臨終及遭受痛苦

It's a key distinction.

這是個關鍵的區別

To get underneath this, it can be very helpful

要處理這件問題，非常效的做法是

to tease out suffering which is necessary as it is,

將死亡無法避免的痛苦

from suffering we can change.

從我們可以改變的痛苦中抽離出來

The former is a natural, essential part of life, part of the deal,

前者是自然發生的過程，生命的本質， 如同一個談好的條件

and to this we are called to make space, adjust, grow.

這讓我們為自己預留空間，自我調整、成長

It can be really good to realize forces larger than ourselves.

認識比自己強大的力量是件好事

They bring proportionality,

它帶來了均衡性

like a cosmic right-sizing.

像個全面性的重新調整

After my limbs were gone,

舉例來說，在我失去肢體之後

that loss, for example, became fact, fixed --

那種損失變成了事實，無可改變

necessarily part of my life,

變成生命中必然的部分

and I learned that I could no more reject this fact than reject myself.

我發現不再拒絕接受這個事實， 因為那等同拒絕自己

It took me a while, but I learned it eventually.

花了一點時間，但我最後還是發現了

Now, another great thing about necessary suffering

這種無可避免的痛苦帶來另一件好事

is that it is the very thing

就是它正是

that unites caregiver and care receiver --

可以連結醫護照顧者和接受者

human beings.

- 也就是人 - 的事

This, we are finally realizing, is where healing happens.

我們最後發現，這就是真正的治療

Yes, compassion -- literally, as we learned yesterday --

是的，同情 -- 如同我們昨天所學到的 --

suffering together.

一起受苦

Now, on the systems side, on the other hand,

至於另一方面 -- 系統這面

so much of the suffering is unnecessary, invented.

卻製造了許多不必要的痛苦

It serves no good purpose.

沒有絲毫好處

But the good news is, since this brand of suffering is made up,

但好消息是，既然這是人製造出來的

well, we can change it.

那我們就可以改變它

How we die is indeed something we can affect.

如何死亡肯定是我們能影響的事

Making the system sensitive to this fundamental distinction

讓整個系統對於必要和非必要痛苦

between necessary and unnecessary suffering

之間的區隔更加靈敏

gives us our first of three design cues for the day.

這給了我們三個設計暗示中的第一個

After all, our role as caregivers, as people who care,

追根究柢， 我們醫護照顧者的角色

is to relieve suffering -- not add to the pile.

是為了要緩和痛苦，不是雪上加霜

True to the tenets of palliative care,

這是慢性治療的宗旨

I function as something of a reflective advocate,

我代表了典型支持者

as much as prescribing physician.

差不多是一位規定內科醫師

Quick aside: palliative care -- a very important field but poorly understood --

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

while it includes, it is not limited to end of life care.

它涵蓋範圍不是止於生命結束

It is not limited to hospice.

也不止於安寧療護

It's simply about comfort and living well at any stage.

它純粹是讓病患在任何階段 都能舒適地好好活著

So please know that you don't have to be dying anytime soon

所以你不是在快要死去的時候

to benefit from palliative care.

才能從慢性治療中得到好處

Now, let me introduce you to Frank.

現在，讓我為你們介紹法蘭克

Sort of makes this point.

他可說是印證了這件事

I've been seeing Frank now for years.

我照顧了法蘭克好些年了

He's living with advancing prostate cancer on top of long-standing HIV.

他一直與前列腺癌 和愛滋病毒為吾

We work on his bone pain and his fatigue,

我們針對他的骨痛和疲勞問題進行診療

but most of the time we spend thinking out loud together about his life --

但大部分的時間其實花在 一起思考他的人生

really, about our lives.

-- 真的，關於我們的人生

In this way, Frank grieves.

這麼做讓法蘭克更悲傷

In this way, he keeps up with his losses as they roll in,

因為不斷面對失去， 讓他一直處於喪去之中

so that he's ready to take in the next moment.

所以他決定要朝下一刻邁進

Loss is one thing, but regret, quite another.

失去是一回事，但後悔是另一回事

Frank has always been an adventurer --

法蘭克一直是個冒險家

he looks like something out of a Norman Rockwell painting --

他看來不是諾曼‧洛克威爾畫作裡的人物

and no fan of regret.

和從不會後悔

So it wasn't surprising when he came into clinic one day,

所以當他某天跑進診所說

saying he wanted to raft down the Colorado River.

他想扒木筏到科羅拉多河去的時候， 一點也不令人意外

Was this a good idea?

那是個好主意嗎?

With all the risks to his safety and his health, some would say no.

以他人生安全和健康狀況做評估， 一些人或許會說不是

Many did, but he went for it, while he still could.

很多人則說是，但他去了， 趁他還能辦到的時候

It was a glorious, marvelous trip:

那是個美妙而非凡的旅程：

freezing water, blistering dry heat, scorpions, snakes,

冰凍的水、極度乾熱、蠍子、蛇

wildlife howling off the flaming walls of the Grand Canyon --

大峽谷火焰般的崖壁中 不斷傳來野生動物的咆哮

all the glorious side of the world beyond our control.

超越我們控制的，世界壯麗的一面

Frank's decision, while maybe dramatic,

法蘭克的決定，可能有點戲劇性

is exactly the kind so many of us would make,

但確實是我們許多人會做的那種決定

if we only had the support to figure out what is best for ourselves over time.

如果我們只堅持一些永遠 對我們都是最好的決定

So much of what we're talking about today is a shift in perspective.

那麼今天我們談的，主要是觀點的移轉

After my accident, when I went back to college,

在意外發生後，當我回到大學時

I changed my major to art history.

我將主修改為藝術史

Studying visual art, I figured I'd learn something about how to see --

透過研究視覺藝術， 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

a really potent lesson for a kid who couldn't change

這是非常強而有力的一課

so much of what he was seeing.

Perspective, that kind of alchemy we humans get to play with,

觀點 -- 這種人類可以控制的鍊金術

turning anguish into a flower.

足以將痛苦轉換為一朵盛開的花

Flash forward: now I work at an amazing place in San Francisco

往前快轉：現在我在舊金山 一個很棒的地方工作

called the Zen Hospice Project,

叫做《禪安寧照護計畫》

where we have a little ritual that helps with this shift in perspective.

在那裡我們有一個幫助這種 觀點移轉的小小儀式

When one of our residents dies,

當我們有一位房客過世

the mortuary men come, and as we're wheeling the body out through the garden,

太平間的人來了，而當我們將遺體穿過花園

heading for the gate, we pause.

朝大門前進時，會先暫停一下

Anyone who wants --

任何人，只要他想要 --

fellow residents, family, nurses, volunteers,

不管是其他房客、家屬、護士、義工

the hearse drivers too, now --

還有靈車司機 --

shares a story or a song or silence,

都可以分享一個故事、唱一首歌， 或者單純的靜默

as we sprinkle the body with flower petals.

就在我們在遺體上撒花瓣時

It takes a few minutes;

這會花幾分鐘的時間

it's a sweet, simple parting image to usher in grief with warmth,

這是個甜蜜而簡單的告別象徵， 用溫暖迎接悲痛

rather than repugnance.

而不是厭惡

Contrast that with the typical experience in the hospital setting,

對比於醫院裡設定的典型體驗

much like this -- floodlit room lined with tubes and beeping machines

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

and blinking lights that don't stop even when the patient's life has.

病患死亡時仍不停閃爍的燈光

Cleaning crew swoops in, the body's whisked away,

清潔人員衝進房間，快速搬走遺體

and it all feels as though that person had never really existed.

一切感覺就像這個人不曾真的存在過

Well-intended, of course, in the name of sterility,

無菌考量，當然是個良好意圖

but hospitals tend to assault our senses,

但醫院很容易侵犯我們的感官

and the most we might hope for within those walls is numbness --

在那些生冷的牆壁裡 我們最多能渴望的大概就是麻木

anesthetic, literally the opposite of aesthetic.

麻木不仁，跟美完全相反

I revere hospitals for what they can do; I am alive because of them.

我為醫院能做到的事情尊敬他們； 他們是我還活著的原因

But we ask too much of our hospitals.

但我們對他們的要求太多了

They are places for acute trauma and treatable illness.

他們是處理急性創傷和可治癒疾病的地方

They are no place to live and die; that's not what they were designed for.

而不是處理生死的地方； 他們不是為此設計的

Now mind you -- I am not giving up on the notion

現在提醒各位 -- 我並沒有放棄

that our institutions can become more humane.

我們的醫療機構需要更人性化的想法

Beauty can be found anywhere.

美好的事物隨處可見

I spent a few months in a burn unit

我在燒燙中心裡待了幾個月

at St. Barnabas Hospital in Livingston, New Jersey,

在紐澤西利文斯頓的聖巴拿巴醫院裡

where I got really great care at every turn,

在那裡我每次都受到很好的照顧

including good palliative care for my pain.

包含針對疼痛所做的慢性治療

And one night, it began to snow outside.

在一個晚上，外面開始下雪

I remember my nurses complaining about driving through it.

我記得護士們正在抱怨要開車穿越雪地

And there was no window in my room,

我的房間沒有窗戶

but it was great to just imagine it coming down all sticky.

但光是想像濕軟的雪花落下也很不錯

Next day, one of my nurses smuggled in a snowball for me.

隔天，其中一個護士 為我偷偷帶進了一個雪球

She brought it in to the unit.

她將雪球帶進燒燙中心

I cannot tell you the rapture I felt holding that in my hand,

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

and the coldness dripping onto my burning skin;

一股股濕冷滴落在我滾燙的皮膚上

the miracle of it all,

那一切奇蹟似的感受

the fascination as I watched it melt and turn into water.

當我看著它融化為水的那種陶醉

In that moment,

在那個時刻

just being any part of this planet in this universe mattered more to me

感覺自己屬於這個世界、這個宇宙的任何部分

than whether I lived or died.

對我而言，比會活下來還是死掉重要

That little snowball packed all the inspiration I needed

這顆小小雪球給了我需要的所有激勵

to both try to live and be OK if I did not.

無論是試著活下來還是接受死亡

In a hospital, that's a stolen moment.

在醫院裡，那段是被偷走的時刻

In my work over the years, I've known many people

在我多年的工作裡，認識了許多

who were ready to go, ready to die.

準備離開、準備好死亡的人

Not because they had found some final peace or transcendence,

並非找到最後的安寧或超然

but because they were so repulsed by what their lives had become --

而是被他們生命最終變成的樣貌給擊敗

in a word, cut off, or ugly.

一言以蔽之，隔絕, 醜陋

There are already record numbers of us living with chronic and terminal illness,

活在長期病痛或絕症中的人數 已經達到歷史新高

and into ever older age.

年齡也不斷攀升

And we are nowhere near ready or prepared for this silver tsunami.

我們完全還沒為這個銀色海嘯做好準備

We need an infrastructure dynamic enough to handle

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

these seismic shifts in our population.

Now is the time to create something new, something vital.

現在正是時候創造一些全新的、 不可或缺的東西

I know we can because we have to.

我知道我們可以，因為我們必須這麼做

The alternative is just unacceptable.

沒有其他選擇

And the key ingredients are known:

而廣為人知的重要要素有：

policy, education and training,

政策、教育和訓練

systems, bricks and mortar.

系統、建築物

We have tons of input for designers of all stripes to work with.

我們有以頓計的訊息 可讓各種不同的設計師進行作業

We know, for example, from research

舉例來說，從研究中得知

what's most important to people who are closer to death:

對接近死亡的人們而言，最重要的是：

comfort; feeling unburdened and unburdening to those they love;

舒適；感覺沒有牽掛， 並不再牽累他們所愛的人

existential peace; and a sense of wonderment and spirituality.

心境平靜，感覺美妙和充滿靈性

Over Zen Hospice's nearly 30 years,

在《禪安寧療護》的近30年裡

we've learned much more from our residents in subtle detail.

我們從房客一些細微的瑣事中學到許多

Little things aren't so little.

這些小事其實不小

Take Janette.

就拿珍妮特來說

She finds it harder to breathe one day to the next due to ALS.

由於患有漸凍人症(ALS)， 她發現一天比一天難以呼吸

Well, guess what?

猜猜怎麼樣?

She wants to start smoking again --

她想要再次開始抽菸

and French cigarettes, if you please.

而且是法國菸，如果可以的話

Not out of some self-destructive bent,

並不是因為她有自我毀滅的傾向

but to feel her lungs filled while she has them.

而是想在她失去她的肺之前， 感覺裡面被充滿

Priorities change.

優先次序有所不同了

Or Kate -- she just wants to know

或是凱特 -- 她只想知道

her dog Austin is lying at the foot of her bed,

她的狗奧斯丁是否躺在床尾

his cold muzzle against her dry skin,

用冷冷的口鼻貼在她乾燥的皮膚上

instead of more chemotherapy coursing through her veins --

而不是更多化療的液體在靜脈裡流竄

she's done that.

那些她經歷過了

Sensuous, aesthetic gratification, where in a moment, in an instant,

感官與美的滿足，在那一刻

立即變成我們活著的獎勵

we are rewarded for just being.

So much of it comes down to loving our time by way of the senses,

我們能用來珍愛剩餘時間的方式， 最終大多只剩下感官

by way of the body -- the very thing doing the living and the dying.

或者身體 -- 千真萬確經歷活著和死亡的東西

Probably the most poignant room

《禪安寧療護》的客房裡

in the Zen Hospice guest house is our kitchen,

氣味最濃烈的地方大概就是廚房了

which is a little strange when you realize

這有點奇怪，如果你發現

that so many of our residents can eat very little, if anything at all.

我們許多房客就算能進食，也非常少量

But we realize we are providing sustenance on several levels:

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

smell, a symbolic plane.

例如氣味，非常象徵性的層面

Seriously, with all the heavy-duty stuff happening under our roof,

說認真的，在我們的許多重責大任之中

one of the most tried and true interventions we know of,

其中一項最常用、最真切的治療方式

is to bake cookies.

就是烘焙餅乾

As long as we have our senses --

只要我們還擁有感官 --

even just one --

儘管只有任何一種 --

we have at least the possibility of accessing

就至少還有機會接近

what makes us feel human, connected.

感覺自己還像個人、和世界連結

Imagine the ripples of this notion

想像一下這個觀點的效應：

for the millions of people living and dying with dementia.

幾百萬人在失智症中經歷生死的轉換

Primal sensorial delights that say the things we don't have words for,

最原始的感官上的愉悅， 說明了我們無法形容的事

impulses that make us stay present --

一股讓我們把注意力放在現在的衝動

no need for a past or a future.

無需在意過去或未來

So, if teasing unnecessary suffering out of the system was our first design cue,

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

then tending to dignity by way of the senses,

那麼在感官上、身體上顧到人們的尊嚴

by way of the body -- the aesthetic realm --

-- 達到美的境界 --

is design cue number two.

則是我們的第二個設計提示

Now this gets us quickly to the third and final bit for today;

這也快速帶到了第三個設計提示， 也是今天最後一個段落

namely, we need to lift our sights, to set our sights on well-being,

也就是，我們需要提高眼界， 將其放在人們的福祉上

so that life and health and healthcare

那麼生命健康和醫療照護

can become about making life more wonderful,

就能變成讓生命更美好

rather than just less horrible.

而不是比較不恐怖

Beneficence.

一種慈善

Here, this gets right at the distinction

這會是以疾病為核心和以人為核心

between a disease-centered and a patient- or human-centered model of care,

兩種醫療模式之間的區別

and here is where caring becomes a creative, generative,

也會讓醫療變成一種有創意、有生產力

even playful act.

甚至好玩的實踐

"Play" may sound like a funny word here.

「玩」這個聽起來像個有趣的詞語

But it is also one of our highest forms of adaptation.

但它也是適應的一種最高境界

Consider every major compulsory effort it takes to be human.

想想人類所有不可或缺的創作成果

The need for food has birthed cuisine.

我們對食物的需求催生了料理

The need for shelter has given rise to architecture.

對遮風避雨的需求造成了建築

The need for cover, fashion.

對遮蔽身體的需求帶來時尚

And for being subjected to the clock,

而因為備受時間的摧殘

well, we invented music.

我們發明了音樂

So, since dying is a necessary part of life,

所以，既然死亡是生命中必然的部分

what might we create with this fact?

我們能為它創造什麼呢?

By "play" I am in no way suggesting we take a light approach to dying

我所謂「好玩」，並不是建議我們 選個輕快有趣的方式死亡

or that we mandate any particular way of dying.

或是指定某種特定的死亡方式

There are mountains of sorrow that cannot move,

有許多的悲傷是我們無法挪走的

and one way or another, we will all kneel there.

無倫如何，我們都得向它屈服

Rather, I am asking that we make space --

相反地，我是希望大家給它一點空間 --

physical, psychic room, to allow life to play itself all the way out --

實體和心靈上的空間， 讓生命可以自己一路享受到最後

so that rather than just getting out of the way,

而不是就這樣被拖離

aging and dying can become a process of crescendo through to the end.

老化和臨終可以變成一段 漸強直至高潮的旋律

We can't solve for death.

我們無法終結死亡

I know some of you are working on this.

我知道你們有些人正在嘗試

(Laughter)

(笑聲)

但這麼做的同時，我們還可以--

Meanwhile, we can --

(笑聲)

(Laughter)

We can design towards it.

我們還是可以針對死亡進行設計

Parts of me died early on,

早些年，部分的我已經死去

and that's something we can all say one way or another.

--不管怎樣，我們都可以這麼說--

I got to redesign my life around this fact,

而我需要針對這個事實 重新設計我的生命

and I tell you it has been a liberation

告訴你們，那是個解放

to realize you can always find a shock of beauty or meaning

當你意識到， 你永遠能在留下的生命裡

in what life you have left,

找到美好事物與意義的驚喜

like that snowball lasting for a perfect moment,

就像那顆雪球存在的完美時刻

all the while melting away.

還有整個它融化的時刻

If we love such moments ferociously,

如果我們能熱愛這樣的時刻

then maybe we can learn to live well --

或許我們就能學會活得精彩--

not in spite of death,

不是無視死亡所以活得精采

but because of it.

而是因為死亡而活得精彩

Let death be what takes us,

讓死亡成為可以引領我們

not lack of imagination.

而非不去想像的東西

Thank you.

謝謝各位

(Applause)

(掌聲)