TEDMED 2013
Amanda Bennett: We need a heroic narrative for death
阿曼达·班内特: 我们需要一个关于死亡的英雄叙事
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阿曼达·班内特和她的丈夫在他们一起的一生中充满了激情和活力 - 直到他们一起的最后一刻。 班内特带给大家一个甜蜜而有力的演说，告诉大家为什么，当面对爱人死亡时，紧紧抓住最后希望并不该被认为是“拒绝现实”。她希望有更多的英雄式的死亡故事 - 与其死者生前的努力和成就相匹配的故事。
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，我想带大家一起
00:15
just for a few minutes
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回到一个
00:17
to a dark night in China,
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在中国的夜晚
00:19
the night I met my husband.
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那个与我丈夫初遇的夜晚
00:22
It was a city so long ago that it was still called
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那是挺久以前了, 北京还被称作
00:26
Peking.
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Peking (北京的英文旧称）
00:28
So I went to a party.
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我当时参加一个聚会
00:30
I sat down next to a stout, middle-aged man
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坐在一个戴着猫头鹰眼镜打着领结的
00:34
with owl glasses and a bow tie,
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壮硕中年男人旁边
00:37
and he turned out to be a Fulbright scholar,
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他原来是一名富布赖特学者
00:40
there in China specifically to study
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在中国从事
00:44
Sino-Soviet relations.
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对中苏关系的研究
00:46
What a gift it was to the eager,
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对我这个年轻而急切的外国记者来说
00:48
young foreign correspondent that I was then.
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这真是一个美好的礼物
00:51
I'd pump him for information,
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我从他这里获得了很多信息
00:53
I'm mentally scribbling notes
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心里开始起草
00:55
for the stories I plan to write.
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我准备写的故事
00:57
I talk to him for hours.
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那天我跟他聊了几个小时
00:59
Only months later,
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几个月之后
01:03
I discover who he really was.
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我发现了他的真实身份
01:05
He was the China representative
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他是美国大豆协会
01:08
for the American Soybean Association.
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驻中国代表
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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你告诉我你是个富布赖特学者。”
01:18
"Well, how long would you have talked to me
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“可是，如果我告诉你我是大豆协会的
01:20
if I told you we're in soybeans?"
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你会跟我聊多久呢？”
01:22
(Laughter)
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（笑声）
01:25
I said, "You jerk."
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我说“混蛋”
01:28
Only jerk wasn't the word I used.
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不过我当时不是用的混蛋这个词
01:32
I said, "You could've gotten me fired."
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我说，“你会让我被解雇的”
01:36
And he said, "Let's get married."
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他说，“我们结婚吧”
01:39
(Laughter)
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（笑声）
01:41
"Travel the world and have lots of kids."
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“带着很多孩子周游世界。”
01:44
So we did.
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于是我们结婚了
01:46
(Laughter)
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（笑声）
01:48
(Applause)
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（鼓掌）
01:53
And what an alive man Terence Bryan Foley
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特伦斯是一个
01:57
turned out to be.
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非常有活力的人
01:58
He was a Chinese scholar
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他是一个中文学者
02:00
who later, in his 60s,
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在他60几岁的时候
02:02
got a Ph.D. in Chinese history.
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还获得了中国历史的博士学位
02:04
He spoke six languages,
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他会六种语言
02:07
he played 15 musical instruments,
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15种乐器
02:09
he was a licensed pilot,
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他有飞行员执照
02:11
he had once been a San Francisco cable car operator,
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他做过旧金山缆车的司机
02:14
he was an expert in swine nutrition,
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他在猪营养学，奶牛，
02:17
dairy cattle, Dixieland jazz, film noir,
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南方爵士，黑色电影方面都是专家
02:21
and we did travel the country, and the world,
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我们也一起周游了世界
02:25
and we did have a lot of kids.
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生了很多孩子
02:27
We followed my job, and it seemed like
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我们做了很多，似乎
02:29
there was nothing that we couldn't do.
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没有什么是我们做不到的
02:33
So when we found the cancer,
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当他被诊断出癌症
02:36
it doesn't seem strange to us at all
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对我们来说
02:39
that without saying a word to each other,
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这感觉一点也不陌生
02:41
we believed that,
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我们相信
02:44
if we were smart enough
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如果我们够聪明
02:46
and strong enough and brave enough,
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够坚强和勇敢
02:51
and we worked hard enough,
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并且努力奋斗
02:53
we could keep him from dying ever.
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那他一定可以永远活下去
02:58
And for years, it seemed like we were succeeding.
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在好几年里，我们似乎获得了成功
03:02
The surgeon emerged from the surgery.
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他接受过多次手术
03:05
What'd he say? He said what surgeons always say:
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他怎么说？就如外科医生总说的那样
03:07
"We got it all."
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“全部干净了”
03:09
Then there was a setback when the pathologists
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然后当医生仔细地检查过他的肾癌后
03:12
looked at the kidney cancer closely.
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却又充满挫败
03:14
It turned out to be a rare,
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他被发现得的是一种
03:16
exceedingly aggressive type,
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罕见且激进的癌症
03:18
with a diagnosis that was almost universally fatal
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一般来说这样的患者
03:21
in several weeks at most.
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最多只能活几周
03:23
And yet, he did not die.
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但是，他还没有死
03:27
Mysteriously, he lived on.
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他神奇地活了下去
03:30
He coached Little League for our son.
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他为儿子做棒球教练
03:33
He built a playhouse for our daughter.
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为女儿建了玩耍的房子
03:35
And meanwhile, I'm burying myself in the Internet
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同时，我把自己埋在互联网里
03:38
looking for specialists.
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寻找相关的专家
03:40
I'm looking for a cure.
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寻找治疗方案
03:42
So a year goes by
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就这样时间又过了一年
03:44
before the cancer, as cancers do,
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癌症预料中地
03:48
reappears,
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又重新出现
03:50
and with it comes another death sentence,
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随之而来的是又一份死亡判决
03:52
this time nine months.
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这次是九个月
03:54
So we try another treatment, aggressive, nasty.
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我们尝试了另外一种治疗方法，激进而讨厌
03:58
It makes him so sick, he has to quit it,
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这让他非常难受，只好放弃
04:00
yet still he lives on.
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但是他还活着
04:03
Then another year goes by.
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又过了一年
04:05
Two years go by.
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两年
04:06
More specialists.
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为了接受更多专家的治疗
04:08
We take the kids to Italy.
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我们带着孩子去意大利
04:10
We take the kids to Australia.
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去澳大利亚
04:12
And then more years pass,
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更多年过去了
04:15
and the cancer begins to grow.
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癌细胞又开始生长
04:17
This time, there's new treatments on the horizon.
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这次，又有新的治疗方法进入视线
04:20
They're exotic. They're experimental.
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诡异，而且还在试验中
04:22
They're going to attack the cancer in new ways.
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这是一种新的消灭癌症的方法
04:25
So he enters a clinical trial, and it works.
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他参与了这次临床试验，并且成功了
04:29
The cancer begins to shrink,
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癌细胞开始萎缩
04:31
and for the third time,
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第三次
04:33
we've dodged death.
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我们躲过了死亡
04:37
So now I ask you,
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我现在问你
04:40
how do I feel
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我当时是什么感受
04:42
when the time finally comes
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当最后时刻来临的时候
04:45
and there's another dark night,
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在那个
04:48
sometime between midnight and 2 a.m.?
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深夜两点的黑夜里
04:50
This time it's on the intensive care ward
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这次是在重症病房里
04:53
when a twentysomething resident
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一个20多岁的
04:55
that I've never met before
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我从未见过的医生
04:57
tells me that Terence is dying,
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告诉我特伦斯就要不行了
05:00
perhaps tonight.
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可能就在今晚
05:02
So what do I say when he says,
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当他问我，“我能为你做些什么？”
05:05
"What do you want me to do?"
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我说了什么？
05:07
There's another drug out there.
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当时有一种新药
05:09
It's newer. It's more powerful.
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更新，更强
05:11
He started it just two weeks ago.
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他两周前开始服用
05:14
Perhaps there's still hope ahead.
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可能还有希望
05:17
So what do I say?
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我说了什么？
05:19
I say, "Keep him alive if you can."
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我说，“让他活着，如果可以的话。”
05:22
And Terence died six days later.
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特伦斯死于六天之后
05:26
So we fought, we struggled, we triumphed.
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我们战斗过，挣扎过，也胜利过
05:30
It was an exhilarating fight,
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这是一场令人振奋的战斗
05:31
and I'd repeat the fight today
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我会毫不犹豫地
05:33
without a moment's hesitation.
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将战斗继续直至今天
05:36
We fought together, we lived together.
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我们一起战斗，一起生活
05:39
It turned what could have been
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这原本是我们生命中
05:41
seven of the grimmest years of our life
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最严峻的七年，我们把它变成了
05:44
into seven of the most glorious.
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最辉煌的七年
05:47
It was also an expensive fight.
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这是一场昂贵的战斗
05:50
It was the kind of fight and the kind of choices
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这是一种我们每个人
05:52
that everyone here agrees
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都会赞成的
05:54
pump up the cost of end-of-life care,
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大量增加晚年健康支出的
05:56
and of healthcare for all of us.
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战斗和选择
05:58
And for me, for us,
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对于我，对于我们
06:01
we pushed the fight right over the edge,
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我们战斗到了最后一刻
06:03
and I never got the chance to say to him
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我从来没有机会跟他说
06:07
what I say to him now almost every day:
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这句我现在每天重复的话
06:10
"Hey, buddy, it was a hell of a ride."
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“嘿，这真是刺激的过程。”
06:13
We never got the chance to say goodbye.
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我们没有机会互相道别
06:16
We never thought it was the end.
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我们没有想过那就是终结
06:18
We always had hope.
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我们总是充满希望
06:23
So what do we make of all of this?
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我们所做的这一切是为了什么？
06:27
Being a journalist, after Terence died,
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作为一个记者，在特伦斯逝世后
06:31
I wrote a book, "The Cost Of Hope."
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我写了一本书，“希望的代价”
06:34
I wrote it because I wanted to know
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我写这本书是因为我想知道
06:36
why I did what I did,
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我为什么会这么做
06:38
why he did what he did,
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他为什么会这么做
06:40
why everyone around us did what they did.
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我们每一个人为什么会这么做
06:42
And what did I discover?
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那么我发现了什么？
06:44
Well, one of the things I discovered is that
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其中一个便是
06:45
experts think that one answer to
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医生认为能解答
06:48
what I did at the end was a piece of paper,
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我在最后做了的事是一张纸
06:51
the advance directive,
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“预先医疗指示”
06:53
to help families get past the seemingly irrational choices.
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以帮助家人做出这一看似不合理的选择
06:58
Yet I had that piece of paper.
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我们得到了这张纸
07:02
We both did.
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我们都有
07:04
And they were readily available.
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它们很容易获得
07:05
I had them right at hand.
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我正把它们拿在手中
07:07
Both of them said the same thing:
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上面是同样一句话
07:10
Do nothing if there is no further hope.
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如果没有希望，就不要再做什么了
07:14
I knew Terence's wishes
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我清楚地知道特伦斯的愿望
07:16
as clearly and as surely as I knew my own.
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就如同我自己的一样
07:20
Yet we never got to no further hope.
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我们从来没有完全失去希望
07:25
Even with that clear-cut paper in our hands,
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哪怕拿着这张意思明确的纸片
07:28
we just kept redefining hope.
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我们一直重新定义希望
07:32
I believed I could keep him from dying,
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我相信我能阻止他的死亡
07:37
and I'd be embarrassed to say that if I hadn't seen
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这么说我会不好意思，如果我
07:40
so many people and have talked to so many people
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没有见过那么多，跟那么多有着相同情况的人
07:42
who have felt exactly the same way.
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交谈过的话
07:44
Right up until days before his death,
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直到他走的前一天
07:48
I felt strongly
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我仍然坚信
07:52
and powerfully, and, you might say, irrationally,
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你可能觉得是不可理喻
07:56
that I could keep him from dying ever.
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但我坚信我能够阻止他的死亡
08:01
Now, what do the experts call this?
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现在，专家们怎么称呼这种心态？
08:04
They say it's denial.
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他们说这叫拒绝现实
08:07
It's a strong word, isn't it?
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一个很强烈的词，是不是？
08:09
Yet I will tell you that denial
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我告诉你们
08:11
isn't even close to a strong enough word
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这个词远远不够强烈
08:16
to describe what those of us
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完全不能描述我们这种
08:19
facing the death of our loved ones go through.
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面对爱人死亡时的人的心情
08:23
And I hear the medical professionals say,
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我听医生们会这么说，
08:25
"Well, we'd like to do such-and-such,
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“我们想做什么什么，
08:27
but the family's in denial.
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但是被病人的家人拒绝。
08:29
The family won't listen to reason.
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他们听不进任何理由，
08:32
They're in denial.
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他们只会拒绝现实。
08:34
How can they insist on this treatment at the end?
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他们怎么能到了最后还坚持这种治疗呢？
08:36
It's so clear, yet they're in denial."
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很明显，他们拒绝接受现实。”
08:39
Now, I think this maybe isn't
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我想这并不是
08:41
a very useful way of thinking.
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一个有效的思维方式
08:44
It's not just families either.
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不仅仅是家人
08:47
The medical professionals too,
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你作为医生
08:49
you out there, you're in denial too.
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也是在拒绝现实
08:52
You want to help. You want to fix.
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你想帮助，你想治疗
08:55
You want to do.
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你想做一些事情
08:57
You've succeeded in everything you've done,
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你取得过很多成功
09:00
and having a patient die,
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但是现在你的病人要死了
09:02
well, that must feel like failure.
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一定感觉非常失败
09:05
I saw it firsthand.
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我理解这种挫折
09:07
Just days before Terence died,
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就在特伦斯走的前几天
09:10
his oncologist said,
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他的肿瘤医生说，
09:12
"Tell Terence that better days are just ahead."
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“告诉特伦斯，过些天会好些的。”
09:15
Days before he died.
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就在去世的前几天
09:17
Yet Ira Byock,
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达特茅斯学院缓和医疗部的
09:19
the director of palliative medicine at Dartmouth
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主管伊拉·比约克
09:21
said, "You know, the best doctor in the world
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说过，“最优秀的医生
09:24
has never succeeded in making anyone immortal."
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也无法使人长生不死。”
09:29
So what the experts call "denial," I call "hope,"
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医生们所说的“拒绝现实”，我说的“希望”
09:35
and I'd like to borrow a phrase
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然后我想借用
09:38
from my friends in software design.
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一个做软件界的朋友的一句话
09:41
You just redefine denial and hope,
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你重新定义拒绝现实和希望
09:44
and it becomes a feature of being human.
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这是作为人类的一个功能
09:48
It's not a bug.
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而不是一个漏洞
09:49
It's a feature.
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这是一个功能
09:52
(Laughter)
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（笑声）
09:55
So we need to think more constructively
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所以我们需要更具建设性地
09:59
about this very common, very profound
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去思考这一常见，深远
10:03
and very powerful human emotion.
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有力的人类情绪
10:07
It's part of the human condition,
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这是一种人类状态
10:09
and yet our system and our thinking
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但是我们的系统和我们的思维
10:12
isn't built to accommodate it.
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并没有去接受并包容它
10:15
So Terence told me a story on that long-ago night,
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当特伦斯在那个遥远的夜晚给我说了一个故事
10:18
and I believed it.
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我相信了
10:20
Maybe I wanted to believe it.
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也许我只是愿意去相信
10:23
And during Terence's illness, I, we,
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在特伦斯生病期间
10:28
we wanted to believe the story
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我们也同样愿意去相信
10:30
of our fight together too.
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我们一起战斗的故事
10:33
Giving up the fight -- for that's how it felt,
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放弃战斗，这种放弃的感觉
10:36
it felt like giving up --
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不止意味着
10:38
meant giving up not only his life
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放弃他的生命
10:41
but also our story,
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同样意味着
10:45
our story of us as fighters,
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放弃我们一起战斗的故事
10:47
the story of us as invincible,
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放弃我们不可战胜的故事
10:50
and for the doctors, the story of themselves
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放弃医生作为拯救者的
10:52
as healers.
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故事
10:55
So what do we need?
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那我们需要的是什么？
10:57
Maybe we don't need a new piece of paper.
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我们可能不需要一张新的纸片
11:00
Maybe we need a new story,
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而是需要一个新的故事
11:03
not a story about giving up the fight
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不是一个因为没有希望
11:07
or of hopelessness,
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而放弃战斗的故事
11:09
but rather a story of victory and triumph,
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而是一个关于胜利
11:13
of a valiant battle and, eventually,
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关于勇敢战斗
11:18
a graceful retreat,
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和优雅撤退的故事
11:20
a story that acknowledges
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一个承认
11:23
that not even the greatest general defeats every foe,
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最优秀的将军也不能战胜每个敌人
11:27
that no doctor has ever succeeded
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最优秀的医生
11:29
in making anyone immortal,
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也不能使人长生不死
11:32
and that no wife, no matter how hard she tried,
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一个再努力的妻子
11:38
has ever stopped even the bravest,
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也不能阻止
11:42
wittiest and most maddeningly lovable husband
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最勇敢可爱的丈夫
11:47
from dying when it was his time to go.
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死亡的故事
11:51
People did mention hospice,
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有人跟我提过临终关怀
11:53
but I wouldn't listen.
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不过我没有听
11:56
Hospice was for people who were dying,
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临终关怀是给将死之人的
12:00
and Terence wasn't dying.
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但特伦斯并没有将要去世
12:03
As a result, he spent just four days in hospice,
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最后，他只经历了四天的临终关怀
12:06
which I'm sure, as you all know,
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我确信，就像你们所知道的的
12:08
is a pretty typical outcome,
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这是一个典型的结果
12:10
and we never said goodbye
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我们从来没有说再见
12:11
because we were unprepared for the end.
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因为我们从没有准备好面对结束
12:14
We have a noble path to curing the disease,
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我们有高贵的治疗方式
12:18
patients and doctors alike,
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病人和医生都有
12:21
but there doesn't seem to be
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但是我们并没有
12:23
a noble path to dying.
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高贵的死亡方式
12:25
Dying is seen as failing,
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死亡被认为是失败
12:28
and we had a heroic narrative
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我们有一个共同战斗的
12:31
for fighting together,
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英雄故事
12:33
but we didn't have a heroic narrative for letting go.
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却没有一个放手面对死亡的英雄故事
12:38
So maybe we need a narrative
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我们也许需要一个
12:42
for acknowledging the end, and for saying goodbye,
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承认结束，说再见的故事
12:46
and maybe our new story will be
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也许我们新的故事
12:48
about a hero's fight, and a hero's goodbye.
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是关于一个英雄的战斗和离世
12:53
Terence loved poetry,
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特伦斯喜爱诗作，
12:55
and the Greek poet Constantine Cavafy
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而希腊诗人康斯坦丁诺斯·卡瓦菲斯
12:59
is one of my favorite poets.
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则是我的最爱的诗人之一。
13:01
So I'll give you a couple lines from him.
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这里我会引述他的几句诗
13:04
This is a poem about Mark Antony.
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这首诗是关于马克·安东尼的。
13:06
You know Mark Antony, the conquering hero,
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马克·安东尼是个无坚不摧的英雄
13:09
Cleopatra's guy?
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她是埃及女王的男人
13:11
Actually, one of Cleopatra's guys.
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埃及女王的男人之一
13:13
And he's been a pretty good general.
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他是个不错的将军
13:16
He's won all the fights,
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他赢了所有的战斗
13:17
he's eluded all the people that are out to get him,
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他躲开了所有人的追捕
13:19
and yet this time, finally,
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这一次，他最终
13:21
he's come to the city of Alexandria
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来到了亚历山大城
13:23
and realized he's lost.
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发现自己迷失了
13:24
The people are leaving. They're playing instruments.
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人们正在离开
13:26
They're singing.
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边奏乐，边唱歌
13:27
And suddenly he knows he's been defeated.
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他在一瞬间知道自己被打败了
13:30
And he suddenly knows
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他瞬间知道
13:32
he's been deserted by the gods,
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自己被上帝抛弃
13:35
and it's time to let go.
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是时候选择离开了
13:37
And the poet tells him what to do.
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这首诗告诉他如何去做
13:39
He tells him how to say a noble goodbye,
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告诉他如何说一声高贵的再见
13:42
a goodbye that's fit for a hero.
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一个符合英雄身份的再见
13:46
"As if long-prepared,
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“如同长期准备着，
13:48
as if courageous,
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仿佛勇敢面对着，
13:51
as it becomes you
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它成为你
13:54
who were worthy of such a city,
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值得战斗的城市，
13:56
approach the window with a firm step,
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迈着坚实的步伐与情感，
13:58
and with emotion,
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靠近窗口，
14:01
but not with the entreaties
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而不是一个懦夫的诉求
14:03
or the complaints of a coward,
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或抱怨，
14:06
as a last enjoyment,
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作为最后的享受，
14:08
listen to the sounds,
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听着那声音，
14:10
the exquisite instruments of the musical troops,
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那精湛的演奏组成的乐队，
14:13
and bid her farewell,
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与她告别，
14:16
the Alexandria you are losing."
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你正在迷失的亚历山大。“
14:20
That's a goodbye for a man who was larger than life,
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这是一个比生命更伟大男人的道别
14:24
a goodbye for a man
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对于一个
14:26
for whom anything,
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所有事
14:28
well, almost anything,
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几乎所有事都能做的
14:31
was possible,
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男人的道别
14:33
a goodbye for a man who kept hope alive.
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一个保留了希望的男人的道别
14:36
And isn't that what we're missing?
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这正不是我们所缺失的吗？
14:38
How can we learn that people's decisions
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我们如何才能理解
14:40
about their loved ones
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人们面对爱人做出的决定
14:42
are often based strongly, powerfully,
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不正是往往来自于强烈的，有力的
14:45
many times irrationally,
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很多时候并不理智的
14:48
on the slimmest of hopes?
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微薄的希望吗？
14:51
The overwhelming presence of hope
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紧紧抱住一点点希望
14:54
isn't denial.
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不是拒绝现实
14:55
It's part of our DNA as humans,
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而是人类基因的一部分
14:58
and maybe it's time our healthcare system --
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也许我们的医疗系统
15:00
doctors, patients, insurance companies, us,
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医生，病人，保险公司以及我们
15:05
started accounting for the power of that hope.
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是时候开始计算希望的力量了
15:09
Hope isn't a bug.
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希望不是一个漏洞
15:11
It's a feature.
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而是是一个功能
15:13
Thank you.
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谢谢
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