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

翻译人员: Gabriella Hu 校对人员: Huazhe Xie

Well, we all need a reason to wake up.

我们都需要一个醒来的理由。

For me, it just took 11,000 volts.

对我来说是11,000伏特。

I know you're too polite to ask,

我知道你们太礼貌了不会过问，

so I will tell you.

那就让我告诉你们。

One night, sophomore year of college,

在大学二年级，

just back from Thanksgiving holiday,

感恩节假期后的一天晚上，

a few of my friends and I were horsing around,

我和几个朋友闹着玩儿，

and we decided to climb atop a parked commuter train.

决定爬到一列停在一旁的通勤列车顶上。

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

它就停在那儿，缆线就在车顶上方。

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

不知为什么， 这似乎在那个时候是一个好主意。

We'd certainly done stupider things.

我们的确干过比这个还傻的事。

I scurried up the ladder on the back,

我从后面的梯子窜了上去，

and when I stood up,

当我站起来的时候，

the electrical current entered my arm,

一股电流进入了我的手臂，

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

一直到我的脚下然后就这样了。

Would you believe that watch still works?

你能相信那块手表还没坏吗？

Takes a licking!

真是金刚不坏！

(Laughter)

（笑声）

My father wears it now in solidarity.

我的父亲现在还一直戴着那块手表。

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

那天晚上开启了我和死亡 正式的关系——我的死亡——

and it also began my long run as a patient.

也开始了我作为病人的漫长的旅程。

It's a good word.

这是一个很合适的词。

It means one who suffers.

它的意思是一个受苦的人。

So I guess we're all patients.

我想我们应该都是病人吧。

Now, the American health care system

美国的医疗保健系统

has more than its fair share of dysfunction --

有不少的功能障碍——

to match its brilliance, to be sure.

当然，它也有杰出的方面。

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

我现在是一名医生， 安宁病房和临终关怀医生，

so I've seen care from both sides.

所以我从两个角度看医疗系统。

And believe me: almost everyone who goes into healthcare

相信我：几乎每一个从事医疗的人

really means well -- I mean, truly.

都是十分好心的——是真的。

But we who work in it are also unwitting agents

但是我们这些从事医疗的人也是

for a system that too often does not serve.

在一个有许多缺陷的系统中工作。

Why?

为什么呢？

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

其实有一个很简单的答案，

and it explains a lot:

而且也能反映很多事情：

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

因为医疗系统的设计是针对疾病的， 而病人不是焦点，

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

也就是说这个设计是有问题的。

And nowhere are the effects of bad design more heartbreaking

而在生命的尽头，不良的设计的影响

or the opportunity for good design more compelling

更加让人心痛，完善的设计的机会

than at the end of life,

也显得更有必要，

where things are so distilled and concentrated.

因为在生命的尽头， 所有的东西都是浓缩下来的精华。

There are no do-overs.

没有重新来过的机会。

My purpose today is to reach out across disciplines

我今天的目的就是号召各个领域的人们，

and invite design thinking into this big conversation.

邀请大家把设计思维带入这个大话题中。

That is, to bring intention and creativity

也就是将好意和创意

to the experience of dying.

带入濒死的经历。

We have a monumental opportunity in front of us,

这是一个十分难得的机会，

before one of the few universal issues

这是一个会影响到个人， 以及整个社会的

as individuals as well as a civil society:

普遍问题之一：

to rethink and redesign how it is we die.

重新思考并设计我们如何面对死亡。

So let's begin at the end.

我们从终点开始谈起。

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

对大多数人来说， 变成死人并不是死亡最可怕的部分，

it's dying, suffering.

最可怕的是垂死，病痛。

It's a key distinction.

这是一个关键的区别。

To get underneath this, it can be very helpful

为了更好地领会这一切， 那就非常有必要

to tease out suffering which is necessary as it is,

区分一下死亡无法避免的痛苦

from suffering we can change.

和我们可以改变的痛苦。

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

前者是一个自然的， 生命中必不可少的一部分，

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

于是我们为自己预留空间，调整，成长。

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

能够认识到有比自己更强大的力量是件好事。

They bring proportionality,

这能够带给我们均衡性，

like a cosmic right-sizing.

一个全新的自我认识。

After my limbs were gone,

在我失去肢体之后，

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

这个损失变成了一个事实，无法改变——

necessarily part of my life,

这变成了我生活中的一部分，

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

我认识到抵触这个事实就是在抵触自己。

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

过了一段时间，我才最终认识到这一点。

Now, another great thing about necessary suffering

这种不可避免的痛苦的另一个好处

is that it is the very thing

是它最能够

that unites caregiver and care receiver --

团结照顾者和被看护者——

human beings.

增进人与人之间的关系。

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

我们意识到这就是痊愈的开始。

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

是的，同情——就像我们昨天所学的——

suffering together.

一起承担。

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

从另一方面，从医疗系统的角度来看，

so much of the suffering is unnecessary, invented.

有许多痛苦都是没有必要的，制造出来的。

It serves no good purpose.

没有任何意义。

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

但是好消息是：既然这种痛苦是人为造成的，

well, we can change it.

那我们就可以改变它。

How we die is indeed something we can affect.

如何死亡确实是我们可以改变的。

Making the system sensitive to this fundamental distinction

让整个系统辨别不可避免的痛苦

between necessary and unnecessary suffering

和没有必要的痛苦之间的最基本的区别

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

给予了我们三个中第一个的设计暗示。

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

毕竟我们作为照顾者的角色，

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

照顾病人是去减轻他的痛苦， 而不是雪上加霜。

True to the tenets of palliative care,

这是缓和医疗的原则，

I function as something of a reflective advocate,

我的职责就是当一个支持者，

as much as prescribing physician.

就像一个处方医生一样。

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

顺便提一下：缓和医疗——是一个非常重要的 工作领域，但是经常被误解——

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

它涵盖，但不仅限于病人临终前。

It is not limited to hospice.

不仅限于安宁病房。

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

而是在任何一个阶段 都有舒适的生活品质。

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

所以不一定是在病人临终前

to benefit from palliative care.

才能得到安宁缓和医疗。

Now, let me introduce you to Frank.

现在，让我给你们介绍一下弗兰克。

Sort of makes this point.

他可以证明这一点。

I've been seeing Frank now for years.

我照顾弗兰克好多年了。

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

他患有前列腺癌，外加艾滋病。

We work on his bone pain and his fatigue,

我们针对治疗他的骨痛和疲倦问题，

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

但是我们大多时间都在一起思考他的人生——

really, about our lives.

其实，就是我们的人生。

In this way, Frank grieves.

弗兰克用这种方法表达他的悲痛。

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

他用这种方法面对他所失去的一切，

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

这样他才能去面对下一个难题。

Loss is one thing, but regret, quite another.

失去是一回事儿，而后悔是另一回事儿。

Frank has always been an adventurer --

弗兰克一直是一个探险家——

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

他看上去像诺曼·洛克威尔的画里的人物——

and no fan of regret.

他从不后悔。

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

所以我一点都不惊讶有一天他来到诊所，

saying he wanted to raft down the Colorado River.

跟我说他想泛竹筏从科罗拉多河顺流而下。

Was this a good idea?

这是一个好主意吗？

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

考虑到他的人身安全和健康情况， 有些人会说这不行。

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

很多人都这么说，但是他依旧去了， 趁他还有能力去的时候。

It was a glorious, marvelous trip:

那是一个美好，奇妙的旅程：

freezing water, blistering dry heat, scorpions, snakes,

冰凉的水，干热的酷暑，蝎子，蛇，

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

大峡谷似火的岩壁上各种野生动物的嚎叫——

all the glorious side of the world beyond our control.

都是我们无法控制的世界的壮丽的一面。

Frank's decision, while maybe dramatic,

弗兰克的决定，或许有些戏剧性，

is exactly the kind so many of us would make,

但是如果我们有我们所需要的支持， 去寻找做最有利于自己的选择，

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

那我们大多数人可能都会做出这样的选择。

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

今天聊到的许多都是从不同角度看问题。

After my accident, when I went back to college,

在我的事故发生之后，我回到了大学，

I changed my major to art history.

我把我的主修改成了艺术史。

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

在学习视觉艺术的过程中， 我发现我学会了如何去观察——

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

对于一个无法改变过去所见的孩子来说，

so much of what he was seeing.

那是强有力有的一课。

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

观点是一种人们可以改变的炼金术，

turning anguish into a flower.

可以把煎熬变成花朵。

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

往前快进： 现在我在旧金山一个很棒的地方工作，

called the Zen Hospice Project,

叫做禅宗安宁病房项目。

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

在那里我们会举行一个小仪式 帮助我们换一个角度看问题。

When one of our residents dies,

当我们的一个病人去世后，

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

太平间的人会来， 当我们推他的遗体车穿过花园时，

heading for the gate, we pause.

在大门前，我们会停留片刻。

Anyone who wants --

任何人——

fellow residents, family, nurses, volunteers,

其他的住客，家人，护士，志愿者，

the hearse drivers too, now --

还有灵车司机——

shares a story or a song or silence,

如果他们愿意，他们会分享一段故事， 一首歌，或者简单的沉默，

as we sprinkle the body with flower petals.

同时，我们在遗体上撒花瓣；

It takes a few minutes;

只有几分钟的时间；

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

这是个很美好，简单的告别场景， 用温暖迎接悲痛，

rather than repugnance.

而不是厌恶。

Contrast that with the typical experience in the hospital setting,

把这个和普通的医院中的环境对比，

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

差不多跟这个一样——灯光照明的房间中 排满各种管子和嘟嘟叫的机器，

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

还有不停闪烁的灯光， 尽管病人的生命已经停止了。

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

清理人员立即进来，遗体被快速地接走，

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

然后就好像那个人从来没有存在过似的。

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

从卫生角度考虑，他们的做法当然有道理，

but hospitals tend to assault our senses,

但是医院很容易侵犯我们的感官，

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

在那四面墙内，我们最多也只能期盼麻木——

anesthetic, literally the opposite of aesthetic.

麻木不仁，字面意思上和美感完全相反。

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

我敬仰医院所做的一切， 因为有它们我现在还活着。

But we ask too much of our hospitals.

但是我们对医院的要求太高了。

They are places for acute trauma and treatable illness.

它们是处理急性创伤和可治疗疾病的地方。

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

它们不是应对生死的地方； 它们不是为这个而设计的。

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

提醒一下——我并没有放弃把

that our institutions can become more humane.

我们的医疗机构变得更加人性化的想法。

Beauty can be found anywhere.

任何地方都有美好的事物。

I spent a few months in a burn unit

我在在新泽西州利文斯顿的圣巴纳巴斯医院

at St. Barnabas Hospital in Livingston, New Jersey,

烧伤科呆了几个月。

where I got really great care at every turn,

我在那里得到无微不至的照顾，

including good palliative care for my pain.

包括针对我的病痛的缓和治疗。、

And one night, it began to snow outside.

有一天晚上，外面开始下雪。

I remember my nurses complaining about driving through it.

我记得我的护士抱怨在雪天开车。

And there was no window in my room,

我的房间没有窗户，

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

但是能想象迷漫的雪花也很好。

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

第二天，有一个护士为我偷偷地带进来一个雪球。

She brought it in to the unit.

她把雪球带到烧伤中心里面。

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

我无法描述我用手捧着雪球 那种欣喜若狂的感觉，

and the coldness dripping onto my burning skin;

一股股寒意滴在我滚烫的皮肤上；

the miracle of it all,

这一切有多么神奇，

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

我入迷地看着它融化成水。

In that moment,

在那一刻，

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

能够属于这个星球上， 这个宇宙中任何一个部分对我来说

than whether I lived or died.

比我的生与死还要重要。

That little snowball packed all the inspiration I needed

那个小小的雪球包含了一切我所需要的鼓舞，

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

无论我试着活下去， 还是接受死亡都可以接受。

In a hospital, that's a stolen moment.

在医院里，那是我珍藏的一段回忆。

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

在我多年的工作中，我结交了许多

who were ready to go, ready to die.

愿意离开，准备好接受死亡的人。

Not because they had found some final peace or transcendence,

并不是因为他们找到了 最终的安乐或者超越，

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

而是因为他们被他们 生命中的转折击退了——

in a word, cut off, or ugly.

有一个词，也就是隔绝，丑陋。

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

生活在长期病痛中和患有绝症的人 已经是历史新高了，

and into ever older age.

年龄也不断攀升。

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

而我们丝毫没有准备好迎接这个银色海啸。

We need an infrastructure dynamic enough to handle

我们需要一个有足够动力的 基础设施去应对

these seismic shifts in our population.

这些人口比例的重大变化。

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

现在正是时候去创造一个 全新的，重要的系统。

I know we can because we have to.

我知道我们可以成功， 因为我们必须要这么做。

The alternative is just unacceptable.

我们没有选择的余地。

And the key ingredients are known:

而且，我们已经把握住关键的因素了：

policy, education and training,

政策，教育和训练，

systems, bricks and mortar.

系统，砖块和砂浆。

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

我们有无数的信息可以供设计师参考搭建。

We know, for example, from research

比如说，从调查研究中，我们可以得知

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

对于临终的人而言，什么更加重要：

comfort; feeling unburdened and unburdening to those they love;

舒适；没有任何负担，也不牵累他们爱的人；

existential peace; and a sense of wonderment and spirituality.

心境平静；充满感叹和灵性的感觉。

Over Zen Hospice's nearly 30 years,

在禅宗安宁病房将近30年的历史中，

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

我们从我们的住客的 微妙的细节中学到了很多。

Little things aren't so little.

有些东西没有它看上去那么小。

Take Janette.

拿珍妮特举例。

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

因为她患有渐冻人症， 每一天她的呼吸都会变得更加困难。

Well, guess what?

你们猜怎么样？

She wants to start smoking again --

她又开始想抽烟了——

and French cigarettes, if you please.

还是法国香烟，如果可以的话。

Not out of some self-destructive bent,

并不是因为自我摧残的倾向，

but to feel her lungs filled while she has them.

而是想在她还有肺的时候， 去感受她的肺被充满的感觉。

Priorities change.

优先顺序不同了。

Or Kate -- she just wants to know

还有凯特——她只想感受着

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

她的狗狗奥斯丁躺在她的床脚，

his cold muzzle against her dry skin,

他冷冷的鼻子贴着她干燥的皮肤，

instead of more chemotherapy coursing through her veins --

而不是让更多的化疗流淌在她的血液中——

she's done that.

她已经经历过了。

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

在一刹那间，能够感受到美感的满足

we are rewarded for just being.

立刻成为我们活着的奖励。

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

这种感觉在我们珍爱的时间中 通过感官和我们的身体——

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

也就是正在经历生命和死亡的东西。

Probably the most poignant room

也许在禅宗安宁病房中

in the Zen Hospice guest house is our kitchen,

最凄凉的地方是我们的厨房，

which is a little strange when you realize

你肯定觉得这有点奇怪，

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

因为有许多住在病房中的人 就算能进食，也只能很少量。

But we realize we are providing sustenance on several levels:

但是我们意识到这样可以在 许多层面上给他们提供支持：

smell, a symbolic plane.

比如嗅觉，一个象征性的平面。

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

真的，在我们的病房中所有的重大责任中，

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

其中我们所知的尝试过多次， 也是最真切的治疗方法，

is to bake cookies.

是烘焙饼干。

As long as we have our senses --

只要我们还有感官——

even just one --

哪怕只有一个——

we have at least the possibility of accessing

我们至少还有可以接触

what makes us feel human, connected.

人性的感觉，和世界连接。

Imagine the ripples of this notion

对于全世界数百万的与痴呆症

for the millions of people living and dying with dementia.

生死搏斗的人来说， 我们可以想象一下这个观点的效应。

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

最原始的感官上的愉悦是我们无法用语言描述的，

impulses that make us stay present --

是使我们珍惜当下的冲动——

no need for a past or a future.

不需要回到过去或者展望未来。

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

如果把不必要的痛苦从系统中剔除 是我们的第一个设计提示的话，

then tending to dignity by way of the senses,

那么给予人们感官上的，

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

身体上的尊严—— 美感的境界——

is design cue number two.

则是我们的第二个设计提示。

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

这也把我们带到今天 第三个和最后一个部分；

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

也就是，我们需要提高眼界， 把重点放在人们的福祉上，

so that life and health and healthcare

为的是生命，健康和医疗

can become about making life more wonderful,

可以使生活变得更加美好，

rather than just less horrible.

而不只是少几分可怕。

Beneficence.

慈善。

Here, this gets right at the distinction

区别就在这儿，

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

在一个以疾病为核心 和一个以人为核心的医疗模式之间，

and here is where caring becomes a creative, generative,

在这儿，医疗变成了一种有创意、生产力，

even playful act.

甚至好玩的举动。

"Play" may sound like a funny word here.

"玩"在这里是一个很有趣的词。

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

但它也是我们适应的最高境界之一。

Consider every major compulsory effort it takes to be human.

想一想人类每一个不可缺少的需求。

The need for food has birthed cuisine.

我们对食物的需求带来了烹饪。

The need for shelter has given rise to architecture.

我们对遮风避雨的需求构成了建筑。

The need for cover, fashion.

我们对遮蔽身体的需求促成了时尚。

And for being subjected to the clock,

而因为我们要服从于时间，

well, we invented music.

我们发明了音乐。

So, since dying is a necessary part of life,

那么，既然死亡也是生命中 必不可少的一部分，

what might we create with this fact?

我们又能创造出什么呢？

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

说到"玩"，我决不是 在提议我们轻视死亡

or that we mandate any particular way of dying.

或者指定某种特定的死亡方式。

There are mountains of sorrow that cannot move,

有许多悲伤是我们无法消除的，

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

无论如何，我们都会屈服于它的。

Rather, I am asking that we make space --

我只是希望大家可以创造一点空间——

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

生理和心理上的空间， 让生命自己走完它的路——

so that rather than just getting out of the way,

而不是把它赶走，

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

衰老和临终可以变成 一个渐强的过程一直到结尾。

We can't solve for death.

我们无法避免死亡。

I know some of you are working on this.

我知道你们有些人在尝试。

(Laughter)

（笑声）

Meanwhile, we can --

在此同时，我们可以——

(Laughter)

（笑声）

We can design towards it.

我们可以针对死亡做设计。

Parts of me died early on,

我的一部分很早以前就已经死了，

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

不管怎么说，事实就是这样。

I got to redesign my life around this fact,

但是我针对这个事实重新设计了我的人生，

and I tell you it has been a liberation

当你意识到你在生命中

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

永远可以找到 美好的事物和有意义的事情时，

in what life you have left,

我可以告诉你们这是一种解放。

like that snowball lasting for a perfect moment,

就像那个停留在完美的一瞬间的雪球，

all the while melting away.

同时一直在融化。

If we love such moments ferociously,

如果我们能够拼尽全力去爱那些片刻，

then maybe we can learn to live well --

也许我们就能学会如何活得更加精彩——

not in spite of death,

不是不顾死亡而活得精彩，

but because of it.

而是因为死亡而活得精彩。

Let death be what takes us,

可以让死亡夺走我们的生命，

not lack of imagination.

但别让它带走我们的想象力。

Thank you.

谢谢

(Applause)

（掌声）