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生命终结真正重要的是什么

What really matters at the end of life | BJ Miller

每个人都需要一个契机 来唤醒自己
Well, we all need a reason to wake up.
于我而言 那是一万一千伏的高压
For me, it just took 11,000 volts.
我知道各位都很有礼貌 不愿问我怎么回事儿
I know you’re too polite to ask,
那么就让我来说吧
so I will tell you.
那是我还在读大二时的某个晚上
One night, sophomore year of college,
刚刚过完感恩节回来
just back from Thanksgiving holiday,
我和几个朋友们出去瞎玩儿
a few of my friends and I were horsing around,
然后大家决定爬上一辆停靠着的城际列车车顶
and we decided to climb atopa parked commuter train.
列车就那么停在那 上面布满了电线
It was just sitting there,with the wires that run overhead.
不管怎么说 那个主意在当时听起来很赞
Somehow, that seemedlike a great idea at the time.
我们当然也做过更蠢的事儿
We’d certainly done stupider things.
我顺着车背面的梯子窜了上去
I scurried up the ladder on the back,
当我站起身时
and when I stood up,
强大的电流穿过了我的胳膊
the electrical current entered my arm,
毁了我的双脚 这就是事情的经过
blew down and out my feet, and that was that.
你们相信吗?那块手表现在还能用
Would you believe that watch still works?
只需要轻轻拍打一下
Takes a licking!
(笑声)
(Laughter)
为了我 我父亲现在还戴着它
My father wears it now in solidarity.
从那晚起 我就与死亡正式展开了交锋——
That night began my formal relationship with death —
我的死亡
my death —
我也自此成了一个长期的病人
and it also began my long run as a patient.
这是好听点的说法
It’s a good word.
指的是那些受痛苦折磨的人
It means one who suffers.
所以 我想可能我们都是病人
So I guess we’re all patients.
美国现有的医疗体系
Now,the American health care system
存在问题比它紊乱的“公平分配”更大
has more than its fair share of dysfunction —
并没有那么完美
to match its brilliance, to be sure.
我现在是名医生 负责临终关怀和姑息治疗
I’m a physician now, a hospice and palliative medicine doc,
所以我从病人和医生两方面体会这种制度
so I’ve seen care from both sides.
相信我 几乎每个参加医疗工作的人
And believe me: almost everyonewho goes into healthcare
都是怀着善意的 真的
really means well — I mean, truly.
但我们这些参加医疗工作的人却不知不觉的
But we who work in it are also unwitting agents
成了这个漏洞百出的医疗体系的替罪羊
for a system that too often does not serve.
为什么?
Why?
这个问题的答案很简单
Well, there’s actually a pretty easy answer to that question,
也能说明很多问题:
and it explains a lot:
因为医疗是以疾病而非以人为中心设计的
because healthcare was designedwith diseases, not people, at its center.
也就是说 它设计的很糟糕
Which is to say, of course,it was badly designed.
这种糟糕的设计导致的负面影响
And nowhere are the effects of bad design
(在生命终结时)格外令人心碎
more heartbreaking
或者说良好的设计机会
or the opportunity for good design more
在生命终结时(比任何时候)都更具有吸引力
compelling than at the end of life,
在生命终结时 一切都很纯粹和集中
where things are so distilledand concentrated.
没有机会重头再来
There are no do-overs.
今天我想脱离一些条条框框
My purpose today isto reach out across disciplines
将设计思维引入这场大讨论中
and invite designed thinkinginto this big conversation.
就是说 带来一些导向和创造力
That is, to bring intention and creativity
给有关死亡的经验
to the experience of dying.
有一个极好的机会摆在我们的前面
We have a monumental opportunity in front of us,
是一个为数不多的普遍性问题
before one of the few universal issues
是个人和全体社会都面对的:
as individuals as well as a civil society:
去重新思考 重新设计我们应该怎样面对死亡
to rethink and redesign how it is we die.
让我们来从结尾开始
So let’s begin at the end.
对大多数人来说 死亡的最可怕之处不是死去
For most people, the scariest thingabout death isn’t being dead,
而是慢慢的死去 充满痛苦的过程
it’s dying, suffering.
这是个关键的差别
It’s a key distinction.
对理解下面的内容会很有帮助
To get underneath this, it can be very helpful
去区分出确实哪些是需要遭受的苦难
to tease out suffering which is necessary as it is,
哪些是我们能够改变的苦难
from suffering we can change.
前者是生命中必不可少 必须承受的部分
The former is a natural, essential part of life,
是平等交易的一部分
part of the deal,
为应对这些苦难我们需要给自己一些空间 以调整 成长
and to this we are called to make space, adjust, grow.
意识到超越自身的能量的感觉会很棒
It can be really good to realize forces larger than ourselves.
这种能量会带来相称性
They bring proportionality,
就像宇宙的适当扩缩规模一样
like a cosmic right-sizing.
在失去我的左手和双脚后
After my limbs were gone,
这种失去 就成为了无可动摇的现实
that loss, for example, became fact, fixed —
是我生命中必须的一部分
necessarily part of my life,
我意识到我不可能排斥这个事实就如同我不能排斥我自己一样
and I learned that I could no more reject this fact than reject myself.
我纠结了一段时间 但最后 我意识到了
It took me a while, but I learned it eventually.
现在 必遭的苦难带来的另一点好处是
Now, another great thingabout necessary suffering
是它真正地
is that it is the very thing
将照料者和被照料者联系在一起——
that unites caregiver and care receiver —
组成了人类
human beings.
我们最后意识到的这一点 正是治愈开始的时候
This we are finally realizing,is where healing happens.
同情 从字面来说 就如我们昔日学到的
Yes, compassion literally, as we learned yesterday
感同身受
suffering together.
现在 站在制度这一边 就是换个角度
Now, on the systems side,on the other hand,
太多的苦难都是不必要的 是人为制造的
so much of the suffering is unnecessary, invented.
它毫无益处
It serves no good purpose.
但好消息是
But the good news is,
既然这些苦难是人为地臆造出来的
since this brand of suffering is made up,
我们可以改变它
well, we can change it.
我们能真正地改变我们死亡的方式
How we die is indeed something we can affect.
要让医疗制度更好的区别这种根本的不同
Making the system sensitiveto this fundamental distinction
这种必须和不必须遭受的苦难的不同
between necessary and unnecessary suffering,
这就给了我们今天三种设计思路中的第一种
gives us our first of threedesign cues for the day.
总之 我们的角色是照顾者 是去关照别人
After all, our role as caregivers,as people who care,
去缓解苦难 不是加重它
is to relieve suffering not add to the pile.
我信赖姑息疗法的原则
True to the tenets of palliative care,
我的职能是一位会反省的倡导者
I function as something of a reflective advocate,
也是一位有处方权的内科医师
as much as prescribing physician.
简单地来说 姑息疗法
Quick aside: palliative care —
一个非常重要但鲜有人知的领域
a very important field but poorly understood —
它包含的 不仅限于生命即将结束时的照料
while it includes, it is not limited to end of life care.
不仅限于临终关怀
It is not limited to hospice.
它是在说 生命的任何阶段都要过得舒适有质量
It’s simply about comfort and living well at any stage.
所以需要清楚的是 不是只有在即将去世时
So please know that you don’t have to be dying anytime soon
才能从姑息疗法中获益
to benefit from palliative care.
我来给大家介绍一下弗兰克
Now, let me introduce you to Frank.
似乎能说明这一点
Sort of makes this point.
这几年来 我一直在给他看病
I’ve been seeing Frank now for years.
他感染HIV很久了 还患有继发性的前列腺癌
He’s living with advancing prostate cancer on top of long-standing HIV.
我们试图减轻他的骨疼痛和疲惫感
We work on his bone pain and his fatigue,
但是大多数时候我们都在一起琢磨他的人生
but most of the time we spend thinking out loud together about his life
实际上是在思考我们的生命
Really, about our lives.
从这点上来说 弗兰克是凄惨的
In this way, Frank grieves.
以这种方式 他慢慢地接受了他所失去的
In this way, he keeps up with his losses as they roll in,
因此他已经准备好了进入下一阶段
so that he’s ready to take in the next moment.
失去是一回事 但是后悔 就完全是另一回事儿了
Loss is one thing, but regret, quite another.
弗兰克一直是一位冒险家
So Frank has always been an adventurer —
他就像是从诺曼・洛克威尔的画中走出来的人一样
he looks like something out of a Norman Rockwell painting
从来都不喜欢后悔
and no fan of regret.
所以这事儿并不令人惊讶 当他有一天来诊所
So it wasn’t surprising when he came into clinic one day,
说他想漂流过科罗拉多河
saying he wanted to raft down the Colorado River.
这主意好吗?
Was this a good idea?
考虑到所有的对他安全和健康有影响的因素
With all the risks to his safety and his health,
一些人可能会说不好
some would say no.
许多人确实这么说了 但他还是去做了 趁他还能去的时候
Many did, but he went for it, while he still could.
这是一个不可思议的非凡壮举
It was a glorious, marvelous trip:
冰冷的河水 极度的干热 有蝎子和蛇出没
freezing water, blistering dry heat,scorpions, snakes,
野兽们在火红的峡谷壁上嚎叫着
wildlife howling off the flaming wallsof the Grand Canyon —
世界上所有壮丽的景色都是人力所不能及的
all the glorious side of the worldbeyond our control.
弗兰克的决定虽然听起来很夸张
Frank’s decision, while maybe dramatic,
但也正是我们中的许多人会做的
is exactly the kind so many of us would make,
前提是我们有了这样的支持
if we only had the support to
随着岁月流逝 明白了生命真正重要的是什么
figure out what is best for ourselves over time.
我们今天讲的大多是关于思维视角的转换
So much of what we’re talking about today is a shift in perspective.
在我出事后 我回到学校
After my accident, when I went back to college,
转到了美术史专业
I changed my major to art history.
学习视觉艺术 我发现我学会了如何去看待事物
Studying visual art, I figured I’d learn something about how to see —
这是很有用的课程 对一个不能改变
a really potent lesson for a kid who couldn’t change
他已经看到的大多数事情的孩子来说
so much of what he was seeing.
不同的视角 人类所拥有的一种魔力
Perspective, that kind of alchemywe humans get to play with,
能在绝望之处开出希望之花
turning anguish into a flower.
回到现在 我在旧金山的一个非常棒的地方工作
Flash forward: now I work at an at an amazing place in San Francisco
叫做禅意善终服务中心
called the Zen Hospice Project,
在那儿我们有个小仪式来帮助转变视角
where we have a little ritual that helps with this shift in perspective.
当我们的一位住客过世后
When one of our residents dies,
殡仪馆的人过来
the mortuary men come,
当我们推着遗体穿过花园时
and as we’re wheeling the body out through the garden,
向着大门前行时 我们会停下来
heading for the gate, we pause.
任何愿意的人
Anyone who wants —
其他的住客 家人 护士 志愿者 还有灵车的司机等人
fellow residents, family, nurses, volunteers, the hearse drivers too,
可以分享一个故事或一首歌或者为逝者默哀
now, shares a story or a song or silence,
在我们给遗体撒满花瓣的时候
as we sprinkle the body with flower petals.
这大约需要几分钟的时间
It takes a few minutes;
在一个甜蜜的 简单的分离图景中
it’s a sweet, simple parting image
带着温暖进入墓地
to usher in grief with warmth,
而不是充满厌恶
rather than repugnance.
与大医院里的传统流程相比
Contrast that with the typical experiencein the hospital setting,
它们更像这样
much like this —
泛光灯照明的房间里布满各种管子和和滴滴作响的机器
floodlit room lined with tubes and beeping machines
闪烁着的灯 直到病人去世都不停下来
and blinking lights that don’t stop even when the patient’s life has.
清洁员工们一拥而入 将尸体迅速移走
Cleaning crew swoops in, the body’s whisked away,
让人感觉好像那个人从来没有真实存在过
and it all feels as though that person had never really existed.
当然 他们有非常正当的理由:保持无菌环境
Well-intended, of course, in the name of sterility,
医院倾向于将我们的感受置之不理
but hospitals tend to assault our senses,
在这些高墙之内 可能我们最希望的是麻木
and the most we might hope for within those walls is numbness.
麻木的 这简直是美学的反义词
anesthetic, literally the opposite of aesthetic.
我因医院能救死扶伤而敬畏它
I revere hospitals for what they can do,
因为医院 我才能活下来
I am alive because of them.
但是我们对我们的医院要求太多了
But we ask too much of our hospitals.
医院是治疗急性创伤和可治愈性的疾病的地方
They are places for acute traumaand treatable illness.
不是让人安度晚年的地方
They are no place to live and die,
医院不是为此而设计的
that’s not what they were designed for.
请注意
Now mind you
我不是要放弃这个概念
I am not giving up on the notion
其实我们的制度可以变得更加人性化
that our institutions can become more humane.
任何地方都可以发现美
Beauty can be found anywhere.
我曾在烧伤科呆过几个月的时间
I spent a few months in a burn unit
在新泽西州利文斯顿的圣巴纳巴斯医院里
at St. Barnabas Hospital in Livingston, New Jersey,
在那里 我受到了无微不至的照顾
where I got really great care at every turn,
包括对痛苦进行了很好的缓和疗法
including good palliative care for my pain.
某天晚上 外面开始下雪了
And one night, it began to snow outside.
我记得我的护士 抱怨在雪地里开车很困难
I remember my nurses complaining about driving through it.
我的房间里没有窗户
And there was no window in my room,
但只是想象一下大雪纷飞的场景就觉得很美好
but it was great to just imagine it coming down all sticky.
第二天 我的一位护士偷偷塞了一个雪球给我
Next day, one of my nurses smuggled in a snowball for me.
她把那个雪球带进了病房
She brought it in to the unit.
我无法形容
I can not tell you
当时我握着那块雪球时的那份狂喜感
the rapture I felt holding that in my hand,
那份凉意滴落在我炙热的皮肤上
and the coldness dripping onto my burning skin
这所有的一切都是奇迹
the miracle of it all,
那种看着它慢慢融化变成了水的神奇感
the fascination as I watched it meltand turn into water.
那个时候
In that moment,
只是能成为这个星球上的微不足道一部分
just being any part of this planet
存在于这浩瀚宇宙上 对我来说
in this universe mattered more to me
都比我活着还是死亡更重要
than whether I lived or died.
那个小雪球唤起了我所需的
That little snowball packed all the inspiration I needed
努力活下来的动力以及如若不能也能坦然的底气
to both try to live and be okay if I did not.
在医院里 那是难得“偷来”的时光
In a hospital, that’s a stolen moment.
在我工作的这些年里 我知道很多人
In my work, over the years, I’ve known many people
已经准备好离开和死亡了
who were ready to go, ready to die.
不是因为他们找寻到了心灵的平静或者超脱
Not because they had foundsome final peace or transcendence,
而是因为他们极其厌恶
but because they were so repulsed
他们的生活状态
by what their lives had become
简而言之 支离破碎 或者丑陋不堪
In a word, cut off, or ugly.
现在已经有像我这样患慢性疾病和不治之症的人数的记录
There are already record numbers of us living with chronic and terminal illness,
而且被记录的人年纪也越来越大
and into ever older age.
面对这场“银色海啸” 我们的准备却远远不足
And we are nowhere near ready or prepared for this silver tsunami.
我们需要建立一套动态的系统
We need an infrastructure dynamic enough to handle
来应对人口结构的重大调整
these seismic shifts in our population.
现在是时候创造一些新的 重要的东西了
Now is the time to createsomething new, something vital.
我知道我们可以 因为我们必须可以
I know we can because we have to.
另外的选择是无法接受的
The alternative is just unacceptable.
关键的因素是众所周知的 政策 教育和培训
And the key ingredients are known: policy, education and training,
制度 一砖一瓦慢慢堆砌
systems, bricks and mortar.
我们有大量的海量资源 可让设计者们一展身手
We have tons of input for designers of all stripes to work with.
我们知道 举个例子来说
We know, for example,
研究表明 对接近死亡的人来说 最重要的是
from research what’s most important to people who are closer to death:
舒适 没有负担 不对所爱的人造成负担
comfort, feeling unburdenedand unburdening to those they love
内心平静 怀有惊奇感 有精神归属感
existential peace and a senseof wonderment and spirituality.
禅意善终服务中心创办将近三十年了
Over Zen Hospice’s nearly 30 years,
从我们的住客的点点滴滴中 我们学到了很多
we’ve learned much more from our residents in subtle detail.
要由小见大
Little things aren’t so little.
比如说珍妮特
Take Janette.
她发现由于ALS 她的呼吸日益困难
She finds it harder to breathe one day to the next due to ALS. Well,
你猜怎么样
guess what?
她想重新开始抽烟
She wants to start smoking again —
最好是法国雪茄 如果可以的话
and French cigarettes, if you please.
这不是出于某些自我毁灭的爱好
Not out of some self-destructive bent,
只是想感觉当她在吸烟时 肺里充盈的那种滋味
but to feel her lungs filled while she has them.
优先做的事情的顺序转变了
Priorities change.
或者说凯特 她只是想确定
Or Kate — she just wants to know
她的爱犬奥斯汀 躺在她的床脚那儿
her dog Austin is lying at the foot of her bed,
它凉凉的鼻子在蹭着她的皮肤
his cold muzzle against her dry skin,
而不是更多的穿过她静脉的化学疗法
instead of more chemotherapycoursing through her veins —
她已经做了很多治疗了
she’s done that.
感觉上的那种真实的满足感 虽然是瞬间而短暂的
Sensuous, aesthetic gratification,where in a moment, in an instant,
但那一刻我们因活着而收获幸福
we are rewarded for just being.
也就是要珍惜我们的时间 通过感官的体验
So much of it comes down to loving our time by way of the senses,
通过身体的体验
by way of the body —
从和生死相伴的变化着的事物中体验
the very thing doing the living and the dying.
也许最令人心酸的房间就是
Probably the most poignant room
禅意善终服务中心会客厅里的厨房了
in the Zen Hospice guest house is our kitchen,
它看起来会有些奇怪 当你意识到
which is a little strange when you realize
我们的病人多数都只能吃一点
that so many of our residents can eat very little,
有的甚至无法进食了
if anything at all.
但我们意识到我们在几个层次上提供了食物
But we realize we are providingsustenance on several levels:
嗅觉 一种象征性的体验
smell, a symbolic plane.
说真的 我们已经在家里做了大量的实验
Seriously, with all the heavy-duty stuff happening under our roof,
我们发现 最行之有效的干预方法
one of the most tried and trueinterventions we know of,
是烘焙饼干
is to bake cookies.
只要我们的感官还健在
As long as we have our senses —
甚至只有一个
even just one —
我们最起码有机会感受到
we have at least the possibility of accessing
作为人的存在感和与社会的联结
what makes us feel human, connected.
想象一下这一点对于
Imagine the ripples of this notion
成百万上千万深受痴呆症之苦的人们意味着什么
for the millions of people living and dying with dementia.
原始的知觉所带来的愉悦
Primal sensorial delights that say the
可以表达言语之外的东西
things we don’t have words for,
激励我们活在当下
impulses that make us stay present
不需要回到过去或穿越到未来
no need for a past or a future.
因此 如果剔除不必要的苦难
So, if teasing unnecessary suffering
在制度之外的苦难 是我们第一个设计思路的话
out of the system was our first design cue,
那么通过感官体验 给人以尊严
then tending to dignity by way of the senses,
赋予人身体体验 满足审美需求
by way of the body — the aesthetic realm
就是第二种设计思路
is design cue number two.
我们快速讲一下今天的第三点和最后一点
Now this gets us quickly to the third and final bit for today,
也就是 我们需要看得更高更远
namely, we need to lift our sights,
关注如何活得更精彩
to set our sights on well-being,
这样 生命和健康和医疗保险
so that life and health and healthcare
可以变得让生活更美好
can become about making life more wonderful,
而不仅仅是不那么可怕
rather than just less horrible.
善行
Beneficence.
在这里 我们正好谈到了一种区别有关
Here, this gets right at the distinction between
以疾病为中心和以病人或者以人为中心的治疗模式
a disease-centered and a patient-or human-centered model of care,
在这一点上 治疗可以变得更具有创造性 多样性
and here is where caring becomes a creative, generative,
甚至是玩耍性的行为
even playful act.
“玩”字可能听起来带有娱乐性质
“Play” may sound like a funny word here.
但它也是人类适应的最高形式
But it is also one of our highest forms of adaptation.
想一想人类的每一种必要的需求
Consider every major compulsory effortit takes to be human.
对食物的需求而产生了烹饪
The need for food has birthed cuisine.
对住所的需要产生建筑学
The need for shelter has given rise to architecture.
对外表的需要产生了时尚业
The need for cover, fashion.
受到时钟的启发
And for being subjected to the clock,
我们创造了音乐
we invented music.
既然死亡是生命必要的一部分
So, since dying is a necessary part of life,
面对这一现实 我们能做些什么呢
what might we create with this fact?
虽用“玩” 字 我绝不是建议我们随意的死去
By”play” I am in no way suggesting we take a light approach to dying
也不是要求一种特殊的死亡方式
or that we mandate any particular way of dying.
悲伤如山 不可撼动
There are mountains of sorrow that cannot move,
无论如何 我们都要拜倒在死神脚下
and one way or another,we will all kneel there.
我只是在说 我们需要制造空间
Rather, I am asking that we make space,
身体 心灵的空间
physical, psychic room,
来让生命以该有的模样继续下去
to allow life to play itself all the way out,
而不是仅仅是坐以待毙
so that rather than just getting out of the way,
让衰老和死亡成为慢慢走向高潮的华美乐章
aging and dying can become a process of crescendo through to the end.
我们还做不到不死不灭
We can’t solve for death.
我知道你们中的一些人在研究这个问题
I know some of you are working on this.
(笑声)
(Laughter)
与此同时
Meanwhile,
我们可以
we can
(笑声)
(Laughter)
我们可以设计通往死亡的道路
We can design towards it.
我的部分躯体早已死去
Parts of me died early on,
这种话我们总是可以随便说的
and that’s something we can all say one way or another.
我将要针对这一现实 重新设计我的生命
I got to redesign my life around this fact,
我告诉你这已经成为了一种解放运动
and I tell you it has been a liberation
意识到你总能
to realize you can always
在你剩余的生命里找到有关美好和生命的意义的那种震撼
find a shock of beauty or meaning in what life you have left,
就像那颗雪球持续的那样一个美好的时刻
like that snowball lasting for a perfect moment,
然后它慢慢融化
all the while melting away.
如果我们极度地喜欢这样的时刻
If we love such moments ferociously,
那么大概我们也可以学会去好好活着
then maybe we can learn to live well —
不只是为了避免死亡
not in spite of death,
而是向死而生
but because of it.
让死亡引领我们前进
Let death be what takes us,
不要缺乏了想象力
not lack of imagination.
谢谢大家
Thank you.
(掌声)
(Applause)

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视频概述

TED经典演讲 临终关怀医师为你讲述向死而生的人生

听录译者

收集自网络

翻译译者

来吧!尉英俊

审核员

审核员 D

视频来源

https://www.youtube.com/watch?v=apbSsILLh28

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