TEDMED 2013
Amanda Bennett: We need a heroic narrative for death
我們需要英雄般的死亡故事
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阿曼達‧貝內特 (Amanda Bennett) 和她的丈夫一起過著充實並富有熱情的生活 -- 直到最後的日子。 貝內特發表了一個甜美又充滿力量的演講，關於爲什麽當心愛的人逝去時，對圓滿結局心存希望不應該被診斷為”拒絕“。她號召一個更英雄般的死亡故事 -- 爲了我們生命中擁有的人。
Amanda Bennett - Journalist
In "The Cost of Hope," Pulitzer Prize winning journalist Amanda Bennett brings an investigative angle to the conversation about end-of-life care. Full bio
In "The Cost of Hope," Pulitzer Prize winning journalist Amanda Bennett brings an investigative angle to the conversation about end-of-life care. Full bio
Double-click the English transcript below to play the video.
00:12
So I'd like you to come back with me
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首先我想帶大家跟我一起
00:15
just for a few minutes
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用幾分鐘回憶
00:17
to a dark night in China,
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那個在中國的深夜
00:19
the night I met my husband.
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那個我初遇我先夫的夜晚
00:22
It was a city so long ago that it was still called
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那是個歷史悠久的城市，而它至今仍被稱作
00:26
Peking.
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北京
00:28
So I went to a party.
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那晚我參加了一個派對
00:30
I sat down next to a stout, middle-aged man
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我在一個矮胖的中年男子身旁坐下
00:34
with owl glasses and a bow tie,
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他戴著一副圓眼鏡，打了一個領結
00:37
and he turned out to be a Fulbright scholar,
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他自稱是「傅爾布萊特計畫」的學者
00:40
there in China specifically to study
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到中國來研究
00:44
Sino-Soviet relations.
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中國和蘇聯的關係
00:46
What a gift it was to the eager,
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對那時候是年輕駐外記者的我
00:48
young foreign correspondent that I was then.
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是一個多麼及時的禮物
00:51
I'd pump him for information,
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我撲向他汲取信息
00:53
I'm mentally scribbling notes
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我用心記下筆記
00:55
for the stories I plan to write.
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為我將要寫的故事做準備
00:57
I talk to him for hours.
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我跟他交流了幾小時
00:59
Only months later,
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僅僅在幾個月之後，
01:03
I discover who he really was.
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我才發現他到底是誰
01:05
He was the China representative
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他是美國豆類協會
01:08
for the American Soybean Association.
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在中國的代表
01:12
"I don't understand. Soybeans?
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“我不理解，大豆？
01:16
You told me you were a Fulbright scholar."
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你告訴我的，你是「傅爾布萊特計畫」學者。”
01:18
"Well, how long would you have talked to me
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“好吧，如果我告訴你我是做大豆的，
01:20
if I told you we're in soybeans?"
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你會跟我聊多久呢？”
01:22
(Laughter)
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（笑）
01:25
I said, "You jerk."
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我說，“你這個混蛋。”
01:28
Only jerk wasn't the word I used.
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當然 “混蛋” 不是當時我用的詞
01:32
I said, "You could've gotten me fired."
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我說，“你可能會害我被開除。”
01:36
And he said, "Let's get married."
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然後他說，“我們結婚吧。”
01:39
(Laughter)
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（笑）
01:41
"Travel the world and have lots of kids."
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“環遊世界，生一堆孩子。”
01:44
So we did.
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所以，我們結婚了。
01:46
(Laughter)
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（笑）
01:48
(Applause)
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（鼓掌）
01:53
And what an alive man Terence Bryan Foley
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結果，特倫斯．布茉恩．佛利
01:57
turned out to be.
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是多麼有趣的人
01:58
He was a Chinese scholar
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他曾是研究中國的學者
02:00
who later, in his 60s,
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之後在他60多歲時
02:02
got a Ph.D. in Chinese history.
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取得了中國歷史博士學位
02:04
He spoke six languages,
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他說六種語言
02:07
he played 15 musical instruments,
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他會演奏15種樂器
02:09
he was a licensed pilot,
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他是認證的飛行員
02:11
he had once been a San Francisco cable car operator,
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他曾經是一名舊金山的纜車操作員
02:14
he was an expert in swine nutrition,
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他曾專精於乳豬的飼養
02:17
dairy cattle, Dixieland jazz, film noir,
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產小牛，迪克西蘭 (Dixieland) 爵士樂，黑色電影
02:21
and we did travel the country, and the world,
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我們遊遍中國，和世界各地
02:25
and we did have a lot of kids.
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我們的確有了很多小孩
02:27
We followed my job, and it seemed like
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我們隨我的工作周遊，而且一切看上去
02:29
there was nothing that we couldn't do.
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似乎沒有什麼是不可能的
02:33
So when we found the cancer,
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所以，當我們發現癌症時
02:36
it doesn't seem strange to us at all
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我們也不覺得怪異
02:39
that without saying a word to each other,
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也沒有相互說些什麼
02:41
we believed that,
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我們曾相信，
02:44
if we were smart enough
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只要我們夠聰明
02:46
and strong enough and brave enough,
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夠堅強、勇敢
02:51
and we worked hard enough,
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夠努力
02:53
we could keep him from dying ever.
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我們就能永遠讓他遠離死亡
02:58
And for years, it seemed like we were succeeding.
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剛開始，我們似乎成功了
03:02
The surgeon emerged from the surgery.
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手術後，外科醫生走出來
03:05
What'd he say? He said what surgeons always say:
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他說了什麼？他說了外科醫生都會說的話：
03:07
"We got it all."
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“一切在我們掌控中。”
03:09
Then there was a setback when the pathologists
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然後，當病理學醫師仔細研究腎癌之後
03:12
looked at the kidney cancer closely.
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他帶來了失望的消息
03:14
It turned out to be a rare,
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它是一種很罕見的
03:16
exceedingly aggressive type,
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極其惡性的類型
03:18
with a diagnosis that was almost universally fatal
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並很有可能
03:21
in several weeks at most.
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幾週內就會死亡。
03:23
And yet, he did not die.
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然而，他沒有過世
03:27
Mysteriously, he lived on.
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奇蹟般地活了下來
03:30
He coached Little League for our son.
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他是我們的兒子 “小聯盟” 的教練
03:33
He built a playhouse for our daughter.
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他為我們的女兒建了遊戲屋
03:35
And meanwhile, I'm burying myself in the Internet
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同時，我埋頭在網路上
03:38
looking for specialists.
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尋找專家
03:40
I'm looking for a cure.
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尋找治療的方法
03:42
So a year goes by
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在癌症復發之前
03:44
before the cancer, as cancers do,
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一年過去了
03:48
reappears,
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癌又回來了
03:50
and with it comes another death sentence,
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另一個死刑出現了
03:52
this time nine months.
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這次只有九個月
03:54
So we try another treatment, aggressive, nasty.
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所以我們嘗試了另外一種治療方案，激進，艱險，
03:58
It makes him so sick, he has to quit it,
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它讓他羸弱到他必須放棄治療，
04:00
yet still he lives on.
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然而，他依舊活了下來
04:03
Then another year goes by.
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一年又過去了
04:05
Two years go by.
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兩年過去了
04:06
More specialists.
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更多的專家
04:08
We take the kids to Italy.
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我們帶著孩子去義大利
04:10
We take the kids to Australia.
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我們帶著孩子去澳大利亞
04:12
And then more years pass,
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很多年過去了
04:15
and the cancer begins to grow.
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癌症又復發了
04:17
This time, there's new treatments on the horizon.
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這次，一種新的治療方法剛剛出現
04:20
They're exotic. They're experimental.
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它們異乎尋常，它們是實驗性的。
04:22
They're going to attack the cancer in new ways.
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它們用一種新方式攻擊癌症
04:25
So he enters a clinical trial, and it works.
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他接受了實驗治療，發揮了效用
04:29
The cancer begins to shrink,
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癌症開始減少
04:31
and for the third time,
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這是我們第三次
04:33
we've dodged death.
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迴避了死亡
04:37
So now I ask you,
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所以，現在我問你
04:40
how do I feel
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我是作何感想
04:42
when the time finally comes
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當那一刻終於到來
04:45
and there's another dark night,
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在另外一個漆黑的深夜
04:48
sometime between midnight and 2 a.m.?
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大概在午夜和半夜兩點之間？
04:50
This time it's on the intensive care ward
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這次是在重症看護病房
04:53
when a twentysomething resident
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一個二十多歲的住院醫生
04:55
that I've never met before
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我從來沒見過的
04:57
tells me that Terence is dying,
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告訴我，特倫斯將要死去
05:00
perhaps tonight.
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也許就在今晚
05:02
So what do I say when he says,
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當他說 “妳希望我為妳做什麽？”
05:05
"What do you want me to do?"
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我說了什麼？
05:07
There's another drug out there.
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現在有另外一種藥物
05:09
It's newer. It's more powerful.
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它更新穎，更有療效
05:11
He started it just two weeks ago.
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他兩週前才開始服用它
05:14
Perhaps there's still hope ahead.
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也許還有希望
05:17
So what do I say?
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所以我說了什麽？
05:19
I say, "Keep him alive if you can."
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我說，“儘可能讓他活著."
05:22
And Terence died six days later.
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但特倫斯在六天後離開了。
05:26
So we fought, we struggled, we triumphed.
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我們抗爭，我們掙扎，我們戰勝
05:30
It was an exhilarating fight,
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那是一場令人興奮的戰鬥
05:31
and I'd repeat the fight today
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我隨時都可以再做一次選擇
05:33
without a moment's hesitation.
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毫不猶豫
05:36
We fought together, we lived together.
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我們並肩戰鬥，我們並肩生存，
05:39
It turned what could have been
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那本來可能是
05:41
seven of the grimmest years of our life
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七年嚴酷的生活
05:44
into seven of the most glorious.
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結果是最光輝的七年
05:47
It was also an expensive fight.
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那也是一場昂貴的戰鬥
05:50
It was the kind of fight and the kind of choices
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那是那種戰鬥和那種選擇
05:52
that everyone here agrees
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我們這裡的每個人都會同意
05:54
pump up the cost of end-of-life care,
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消耗了一生的醫療保險
05:56
and of healthcare for all of us.
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和我們所有的醫療保健
05:58
And for me, for us,
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對於我，對於我們
06:01
we pushed the fight right over the edge,
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我們一直在抗爭的前線
06:03
and I never got the chance to say to him
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我先前一直沒有機會對他說
06:07
what I say to him now almost every day:
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我現在幾乎每天都會對他說
06:10
"Hey, buddy, it was a hell of a ride."
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”那真是一段如同地獄的經歷。“
06:13
We never got the chance to say goodbye.
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我們從來沒有機會說再見
06:16
We never thought it was the end.
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我們從來不認為那就是結局
06:18
We always had hope.
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我們一直保持希望
06:23
So what do we make of all of this?
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所以我們到底得到了什麽？
06:27
Being a journalist, after Terence died,
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作為一名記者，在特倫斯死後，
06:31
I wrote a book, "The Cost Of Hope."
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我寫了一本書，”希望的代價"
06:34
I wrote it because I wanted to know
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我寫這本書是因為我想知道
06:36
why I did what I did,
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爲什麽我那麼做
06:38
why he did what he did,
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爲什麽他那麼做
06:40
why everyone around us did what they did.
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爲什麽每個在我們周圍的人那麼做
06:42
And what did I discover?
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猜猜我發現了什麽？
06:44
Well, one of the things I discovered is that
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在我發現的事情中，其間一件是：
06:45
experts think that one answer to
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專家們認為，爲什麽我那麼做
06:48
what I did at the end was a piece of paper,
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的理由，是一張紙
06:51
the advance directive,
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一個事前的導引
06:53
to help families get past the seemingly irrational choices.
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幫助親人放棄不合理的選擇
06:58
Yet I had that piece of paper.
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然而，我那時有那張紙
07:02
We both did.
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我們都有
07:04
And they were readily available.
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它們很有用
07:05
I had them right at hand.
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它們就在我的手裡
07:07
Both of them said the same thing:
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它們都告訴我們一件事：
07:10
Do nothing if there is no further hope.
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"在絕望時，靜觀其變"
07:14
I knew Terence's wishes
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我知道特倫斯的希望
07:16
as clearly and as surely as I knew my own.
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就像我知道自己的希望一樣清晰和明確
07:20
Yet we never got to no further hope.
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但我們從來未曾奢求
07:25
Even with that clear-cut paper in our hands,
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即使那張表達明確的意向書就在我們手裡
07:28
we just kept redefining hope.
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我們只是不斷重新定義希望
07:32
I believed I could keep him from dying,
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我相信我可以讓他遠離死亡
07:37
and I'd be embarrassed to say that if I hadn't seen
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我可能會很尷尬那麼說，要不是我看到
07:40
so many people and have talked to so many people
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那麼多人，跟那麼多人交談
07:42
who have felt exactly the same way.
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都認同我的感受
07:44
Right up until days before his death,
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就在他去世的前幾天
07:48
I felt strongly
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我強而有力地感覺到
07:52
and powerfully, and, you might say, irrationally,
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你可以說是無理地
07:56
that I could keep him from dying ever.
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我可以永遠讓他遠離死亡。
08:01
Now, what do the experts call this?
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專家們該如何解釋我的反應？
08:04
They say it's denial.
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他們說這是拒絕接受
08:07
It's a strong word, isn't it?
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這是一個強硬的詞，不是嗎？
08:09
Yet I will tell you that denial
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然而我要告訴你，拒絕接受，
08:11
isn't even close to a strong enough word
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一點也不算不上是強硬
08:16
to describe what those of us
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來描述那些失去所愛的人
08:19
facing the death of our loved ones go through.
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要經歷的一切。
08:23
And I hear the medical professionals say,
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我聽到一個醫學專家說，
08:25
"Well, we'd like to do such-and-such,
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“我們想要做這個那個
08:27
but the family's in denial.
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但是親人拒絕接受
08:29
The family won't listen to reason.
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親人不願聽取原因
08:32
They're in denial.
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他們拒絕接受
08:34
How can they insist on this treatment at the end?
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他們是怎樣堅持治療到最後的？
08:36
It's so clear, yet they're in denial."
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很簡單，他們拒絕接受現實。”
08:39
Now, I think this maybe isn't
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現在，我想這也許
08:41
a very useful way of thinking.
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不是一種有用的思考方式
08:44
It's not just families either.
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不只是親人
08:47
The medical professionals too,
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醫學專家也一樣
08:49
you out there, you're in denial too.
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你們在那裡，你們也拒絕現實
08:52
You want to help. You want to fix.
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你們希望幫助，希望解決問題
08:55
You want to do.
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你們希望有所作為
08:57
You've succeeded in everything you've done,
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你們在你做的所有事情中取得成功
09:00
and having a patient die,
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然而有一位病人正在死去
09:02
well, that must feel like failure.
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那一定感覺就是失敗
09:05
I saw it firsthand.
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我親眼所見
09:07
Just days before Terence died,
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就在特倫斯死去的前幾天
09:10
his oncologist said,
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他的腫瘤學家說，
09:12
"Tell Terence that better days are just ahead."
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“告訴特倫斯，明天會更好。”
09:15
Days before he died.
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就在他去世的前幾天
09:17
Yet Ira Byock,
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愛拉碧阿克 (Ira Byock)
09:19
the director of palliative medicine at Dartmouth
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達特茅斯安寧療護的主任
09:21
said, "You know, the best doctor in the world
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說，“你知道的，世界上最好的醫生
09:24
has never succeeded in making anyone immortal."
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從沒有成功讓任何一個人長生不死。”
09:29
So what the experts call "denial," I call "hope,"
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所以，專家們所謂的“拒絕承認”，我稱之為“希望”
09:35
and I'd like to borrow a phrase
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我想借用我一位
09:38
from my friends in software design.
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從事軟體工作朋友的一句話
09:41
You just redefine denial and hope,
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你只是重新定義拒絕與希望，
09:44
and it becomes a feature of being human.
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它成為了人類的特質
09:48
It's not a bug.
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這不是錯誤 (bug)
09:49
It's a feature.
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這是特色
09:52
(Laughter)
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（笑）
09:55
So we need to think more constructively
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所以我們需要更有建設性的思考
09:59
about this very common, very profound
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關於非常普遍，意義深遠
10:03
and very powerful human emotion.
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且強大的人類情感
10:07
It's part of the human condition,
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它是人類的一部分
10:09
and yet our system and our thinking
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因此我們的系統和思維
10:12
isn't built to accommodate it.
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不是用來適應它的
10:15
So Terence told me a story on that long-ago night,
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特倫斯在很久以前的夜裡講了個故事給我聽
10:18
and I believed it.
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我相信它
10:20
Maybe I wanted to believe it.
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也許是我想要去相信它
10:23
And during Terence's illness, I, we,
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在特倫斯生病期間，我，我們
10:28
we wanted to believe the story
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我們要去相信這個故事
10:30
of our fight together too.
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關於我們共同抗爭的故事
10:33
Giving up the fight -- for that's how it felt,
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放棄抗爭 -- 就像什麽感覺呢
10:36
it felt like giving up --
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感覺在放棄 --
10:38
meant giving up not only his life
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意味著不僅僅放棄他的生命
10:41
but also our story,
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也在放棄我們的故事
10:45
our story of us as fighters,
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我們作為抗爭者的故事
10:47
the story of us as invincible,
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我們戰而不敗的故事
10:50
and for the doctors, the story of themselves
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對於醫生們，
10:52
as healers.
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是作為治療者的故事
10:55
So what do we need?
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所以我們需要什麽？
10:57
Maybe we don't need a new piece of paper.
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也許我們並不需要一張新紙
11:00
Maybe we need a new story,
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也許我们需要一個新的故事
11:03
not a story about giving up the fight
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不是關於放棄抗爭的故事
11:07
or of hopelessness,
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或者絕望的故事
11:09
but rather a story of victory and triumph,
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而是一個巨大勝利的故事
11:13
of a valiant battle and, eventually,
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關於一場勇敢的戰爭，並且最終
11:18
a graceful retreat,
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優雅的撤退
11:20
a story that acknowledges
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一個故事闡明了
11:23
that not even the greatest general defeats every foe,
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即使是最偉大的將軍也不能打敗每個敵人
11:27
that no doctor has ever succeeded
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沒有一個醫生曾成功
11:29
in making anyone immortal,
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讓任何人不死
11:32
and that no wife, no matter how hard she tried,
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沒有一位妻子，不管她多麼努力，
11:38
has ever stopped even the bravest,
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曾經阻止過最勇敢、
11:42
wittiest and most maddeningly lovable husband
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最有智慧、最熱愛的丈夫
11:47
from dying when it was his time to go.
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在那一刻來臨時，遠離死亡。
11:51
People did mention hospice,
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人們提到過臨終關懷醫院
11:53
but I wouldn't listen.
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但是我沒有聽進去
11:56
Hospice was for people who were dying,
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臨終關懷醫院是為將要死去的人準備的
12:00
and Terence wasn't dying.
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但是特倫斯不會死去
12:03
As a result, he spent just four days in hospice,
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結果，他只在臨終關懷醫院停留了四天
12:06
which I'm sure, as you all know,
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我相信，大家也明白
12:08
is a pretty typical outcome,
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這是個很典型的結果
12:10
and we never said goodbye
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我們從來沒有說再見
12:11
because we were unprepared for the end.
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因為我們沒有準備好結束
12:14
We have a noble path to curing the disease,
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我們有高貴的治療方式
12:18
patients and doctors alike,
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病人和醫生一樣
12:21
but there doesn't seem to be
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但是似乎沒有
12:23
a noble path to dying.
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高貴的死去方式
12:25
Dying is seen as failing,
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死亡被當做失敗
12:28
and we had a heroic narrative
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我們有英雄般的故事
12:31
for fighting together,
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關於共同抗爭
12:33
but we didn't have a heroic narrative for letting go.
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但是我們沒有英雄般的順其自然
12:38
So maybe we need a narrative
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所以也許我們需要一個故事
12:42
for acknowledging the end, and for saying goodbye,
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關於結束，關於表達再見
12:46
and maybe our new story will be
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也許我們的新故事會是
12:48
about a hero's fight, and a hero's goodbye.
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關於一個英雄的抗爭，和一個英雄的離去
12:53
Terence loved poetry,
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特倫斯熱愛詩詞
12:55
and the Greek poet Constantine Cavafy
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希臘詩人康斯坦丁‧卡瓦菲斯 (Constantine Cavafy)
12:59
is one of my favorite poets.
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是我最喜愛的詩人之一
13:01
So I'll give you a couple lines from him.
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所以我要送給你們一兩句他的詩
13:04
This is a poem about Mark Antony.
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這是關於馬克‧安東尼 (Mark Antony) 的詩
13:06
You know Mark Antony, the conquering hero,
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你們知道馬克‧安東尼，那個征服者英雄
13:09
Cleopatra's guy?
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埃及艷后的情人？
13:11
Actually, one of Cleopatra's guys.
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至少是她的情人之一
13:13
And he's been a pretty good general.
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他是一位很好的將領
13:16
He's won all the fights,
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他贏了所有的戰爭
13:17
he's eluded all the people that are out to get him,
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他躲過了所有想要抓他的人
13:19
and yet this time, finally,
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但是這次，最終，
13:21
he's come to the city of Alexandria
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他來到了亞歷山大城
13:23
and realized he's lost.
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意識到他的失敗
13:24
The people are leaving. They're playing instruments.
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人們正在離去，他們在演奏樂器
13:26
They're singing.
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他們在歌唱
13:27
And suddenly he knows he's been defeated.
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突然間他知道他被打敗了
13:30
And he suddenly knows
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突然間他明白
13:32
he's been deserted by the gods,
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他被神明放棄了
13:35
and it's time to let go.
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順其自然的時間到了
13:37
And the poet tells him what to do.
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詩人告訴他怎麼做
13:39
He tells him how to say a noble goodbye,
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他告訴他怎樣優雅的說再見
13:42
a goodbye that's fit for a hero.
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英雄式的再見
13:46
"As if long-prepared,
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“正如長期準傋
13:48
as if courageous,
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正如勇氣
13:51
as it becomes you
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它成為了你
13:54
who were worthy of such a city,
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值得這樣的城池
13:56
approach the window with a firm step,
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嚴實步往窗前
13:58
and with emotion,
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充滿感情
14:01
but not with the entreaties
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而非乞求
14:03
or the complaints of a coward,
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或者人群的讚美
14:06
as a last enjoyment,
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你最後的享受
14:08
listen to the sounds,
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聆聽那些聲音
14:10
the exquisite instruments of the musical troops,
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樂隊演奏著優美的樂器
14:13
and bid her farewell,
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和她再見
14:16
the Alexandria you are losing."
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你正在失去的亞歷山大城”
14:20
That's a goodbye for a man who was larger than life,
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那是意義大於生命的人的告別
14:24
a goodbye for a man
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這樣一個人的告別
14:26
for whom anything,
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對於他m所有事情
14:28
well, almost anything,
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幾乎是所有的事情
14:31
was possible,
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都是可能的
14:33
a goodbye for a man who kept hope alive.
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一個讓希望永存的人的告別
14:36
And isn't that what we're missing?
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這不正是我們所沒有的嗎？
14:38
How can we learn that people's decisions
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我們是如何知曉
14:40
about their loved ones
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他們心愛的人
14:42
are often based strongly, powerfully,
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常常強烈的，
14:45
many times irrationally,
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很多時候荒誕的
14:48
on the slimmest of hopes?
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依存於最微薄的希望上？
14:51
The overwhelming presence of hope
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壓倒一切的希望
14:54
isn't denial.
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不是拒絕。
14:55
It's part of our DNA as humans,
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是人類DNA的一部份
14:58
and maybe it's time our healthcare system --
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也許現在是時間，我們的醫療系統
15:00
doctors, patients, insurance companies, us,
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醫生，病人，保險公司，我們
15:05
started accounting for the power of that hope.
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開始衡量希望的力量
15:09
Hope isn't a bug.
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希望不是漏洞
15:11
It's a feature.
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它是特色
15:13
Thank you.
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謝謝
15:16
(Applause)
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（鼓掌）
ABOUT THE SPEAKER
Amanda Bennett - JournalistIn "The Cost of Hope," Pulitzer Prize winning journalist Amanda Bennett brings an investigative angle to the conversation about end-of-life care.
Why you should listen
Amanda Bennett is the Executive Editor of Projects and Investigations for Bloomberg News. Previously she served for three years as the Managing Editor of projects for The Oregonian in Portland and was a reporter for The Wall Street Journal for more than 20 years.
In 1997 Bennett shared the Pulitzer Prize for national reporting for a Wall Street Journal investigation on the struggle against AIDS, and in 2001 received a second Pulitzer Prize, for public service, as the lead of a team at The Oregonian. In 2010 Bennett was elected as co-Chairman of the Pulitzer Prize Board.
Bennett has written six books. Her most recent book, The Cost of Hope, is part-memoir, part-investigative report, about her seven-year struggle within the American healthcare system to save her husband from cancer.
Amanda Bennett | Speaker | TED.com