Well, we all need a reason to wake up. For me, it just took 11,000 volts.
嗯,我們都需要一個醒來的理由 對我而言,只需要1萬1千伏特
I know you're too polite to ask, so I will tell you.
我知道你們都太有禮貌,不好意思問 所以直接告訴你們吧
One night, sophomore year of college, just back from Thanksgiving holiday, a few of my friends and I were horsing around, and we decided to climb atop a parked commuter train. It was just sitting there, with the wires that run overhead. Somehow, that seemed like a great idea at the time. We'd certainly done stupider things. I scurried up the ladder on the back, and when I stood up, the electrical current entered my arm, blew down and out my feet, and that was that. Would you believe that watch still works? Takes a licking!
在我大學二年級的一個晚上 剛從感恩節假期回來 我們幾個朋友正在四處嬉戲打鬧 我們決定爬上一台停著的通勤列車 它就停在那,電纜線高掛在上面 不知怎麼回事,當時感覺這個主意棒透了 但我們肯定是幹了些蠢事 我快速爬上了背後的梯子 而當我站上去時 電流竄進我的手臂 一路往下竄,從我的雙腳流出, 結果就是現在你們看到的情況 你們相信手錶竟然還能用嗎? 遭受重擊 (廣告台詞前半段,後接"仍不懈怠")
(Laughter)
(笑聲)
My father wears it now in solidarity.
我父親現在仍因為支持而戴著它
That night began my formal relationship with death -- my death -- and it also began my long run as a patient. It's a good word. It means one who suffers. So I guess we're all patients.
那夜開始了我和死亡的關係 -- 自己的死亡 -- 也同時開啟了我漫長的傷患生涯 傷患 -- 這是個詞語好用 意思是遭受痛苦的人 所以我想我們都算是傷患
Now, the American health care system has more than its fair share of dysfunction -- to match its brilliance, to be sure. I'm a physician now, a hospice and palliative medicine doc, so I've seen care from both sides. And believe me: almost everyone who goes into healthcare really means well -- I mean, truly. But we who work in it are also unwitting agents for a system that too often does not serve.
現在,美國的醫療體系 有太多的不良之處 當然也有好的地方 我現在是個醫生, 負責安寧療護和緩和藥物治療 所以醫生病患兩方的觀點我都看過 相信我,幾乎所有進入醫療體系的人 都是基於非常良善的意圖 -- 我說真的 但在我們醫療體系裡的人 都不知道這個體系經常運作不良
Why? Well, there's actually a pretty easy answer to that question, and it explains a lot: because healthcare was designed with diseases, not people, at its center. Which is to say, of course, it was badly designed. And nowhere are the effects of bad design more heartbreaking or the opportunity for good design more compelling than at the end of life, where things are so distilled and concentrated. There are no do-overs.
為什麼? 事實上,這個問題的答案很簡單 也解釋了很多事: 因為醫療系統設計是針對疾病, 而不是病人 也就是說,必然沒有經過很好的設計 而設計錯誤造成更多傷害 或是優良設計帶來生命終結前 的強制醫療 那令事情更淨化和集中 再也沒有重新開始的機會
My purpose today is to reach out across disciplines and invite design thinking into this big conversation. That is, to bring intention and creativity to the experience of dying. We have a monumental opportunity in front of us, before one of the few universal issues as individuals as well as a civil society: to rethink and redesign how it is we die.
我今天希望能向各領域傳達一個訊息 邀請大家將設計思維帶入這段重要對談 也就是將良好的意圖和創意 帶入死亡的體驗裡 在我們面前有極其難得的機會 以個人和公民社會的身分 思考其中一個普遍的議題之前 重新思考和設計如何死亡這件事情
So let's begin at the end. For most people, the scariest thing about death isn't being dead, it's dying, suffering. It's a key distinction. To get underneath this, it can be very helpful to tease out suffering which is necessary as it is, from suffering we can change. The former is a natural, essential part of life, part of the deal, and to this we are called to make space, adjust, grow. It can be really good to realize forces larger than ourselves. They bring proportionality, like a cosmic right-sizing. After my limbs were gone, that loss, for example, became fact, fixed -- necessarily part of my life, and I learned that I could no more reject this fact than reject myself. It took me a while, but I learned it eventually. Now, another great thing about necessary suffering is that it is the very thing that unites caregiver and care receiver -- human beings. This, we are finally realizing, is where healing happens. Yes, compassion -- literally, as we learned yesterday -- suffering together.
所以讓我們從一切的終點開始談起 對大部分的人而言,死亡最恐怖的事 不是變成死人 而是臨終及遭受痛苦 這是個關鍵的區別 要處理這件問題,非常效的做法是 將死亡無法避免的痛苦 從我們可以改變的痛苦中抽離出來 前者是自然發生的過程,生命的本質, 如同一個談好的條件 這讓我們為自己預留空間,自我調整、成長 認識比自己強大的力量是件好事 它帶來了均衡性 像個全面性的重新調整 舉例來說,在我失去肢體之後 那種損失變成了事實,無可改變 變成生命中必然的部分 我發現不再拒絕接受這個事實, 因為那等同拒絕自己 花了一點時間,但我最後還是發現了 這種無可避免的痛苦帶來另一件好事 就是它正是 可以連結醫護照顧者和接受者 - 也就是人 - 的事 我們最後發現,這就是真正的治療 是的,同情 -- 如同我們昨天所學到的 -- 一起受苦
Now, on the systems side, on the other hand, so much of the suffering is unnecessary, invented. It serves no good purpose. But the good news is, since this brand of suffering is made up, well, we can change it. How we die is indeed something we can affect. Making the system sensitive to this fundamental distinction between necessary and unnecessary suffering gives us our first of three design cues for the day. After all, our role as caregivers, as people who care, is to relieve suffering -- not add to the pile.
至於另一方面 -- 系統這面 卻製造了許多不必要的痛苦 沒有絲毫好處 但好消息是,既然這是人製造出來的 那我們就可以改變它 如何死亡肯定是我們能影響的事 讓整個系統對於必要和非必要痛苦 之間的區隔更加靈敏 這給了我們三個設計暗示中的第一個 追根究柢, 我們醫護照顧者的角色 是為了要緩和痛苦,不是雪上加霜
True to the tenets of palliative care, I function as something of a reflective advocate, as much as prescribing physician. Quick aside: palliative care -- a very important field but poorly understood -- while it includes, it is not limited to end of life care. It is not limited to hospice. It's simply about comfort and living well at any stage. So please know that you don't have to be dying anytime soon to benefit from palliative care.
這是慢性治療的宗旨 我代表了典型支持者 差不多是一位規定內科醫師 順道快速說明:慢性治療是個重要領域 但其實沒有正確地被理解 它涵蓋範圍不是止於生命結束 也不止於安寧療護 它純粹是讓病患在任何階段 都能舒適地好好活著 所以你不是在快要死去的時候 才能從慢性治療中得到好處
Now, let me introduce you to Frank. Sort of makes this point. I've been seeing Frank now for years. He's living with advancing prostate cancer on top of long-standing HIV. We work on his bone pain and his fatigue, but most of the time we spend thinking out loud together about his life -- really, about our lives. In this way, Frank grieves. In this way, he keeps up with his losses as they roll in, so that he's ready to take in the next moment. Loss is one thing, but regret, quite another. Frank has always been an adventurer -- he looks like something out of a Norman Rockwell painting -- and no fan of regret. So it wasn't surprising when he came into clinic one day, saying he wanted to raft down the Colorado River. Was this a good idea? With all the risks to his safety and his health, some would say no. Many did, but he went for it, while he still could. It was a glorious, marvelous trip: freezing water, blistering dry heat, scorpions, snakes, wildlife howling off the flaming walls of the Grand Canyon -- all the glorious side of the world beyond our control. Frank's decision, while maybe dramatic, is exactly the kind so many of us would make, if we only had the support to figure out what is best for ourselves over time.
現在,讓我為你們介紹法蘭克 他可說是印證了這件事 我照顧了法蘭克好些年了 他一直與前列腺癌 和愛滋病毒為吾 我們針對他的骨痛和疲勞問題進行診療 但大部分的時間其實花在 一起思考他的人生 -- 真的,關於我們的人生 這麼做讓法蘭克更悲傷 因為不斷面對失去, 讓他一直處於喪去之中 所以他決定要朝下一刻邁進 失去是一回事,但後悔是另一回事 法蘭克一直是個冒險家 他看來不是諾曼‧洛克威爾畫作裡的人物 和從不會後悔 所以當他某天跑進診所說 他想扒木筏到科羅拉多河去的時候, 一點也不令人意外 那是個好主意嗎? 以他人生安全和健康狀況做評估, 一些人或許會說不是 很多人則說是,但他去了, 趁他還能辦到的時候 那是個美妙而非凡的旅程: 冰凍的水、極度乾熱、蠍子、蛇 大峽谷火焰般的崖壁中 不斷傳來野生動物的咆哮 超越我們控制的,世界壯麗的一面 法蘭克的決定,可能有點戲劇性 但確實是我們許多人會做的那種決定 如果我們只堅持一些永遠 對我們都是最好的決定
So much of what we're talking about today is a shift in perspective. After my accident, when I went back to college, I changed my major to art history. Studying visual art, I figured I'd learn something about how to see -- a really potent lesson for a kid who couldn't change so much of what he was seeing. Perspective, that kind of alchemy we humans get to play with, turning anguish into a flower.
那麼今天我們談的,主要是觀點的移轉 在意外發生後,當我回到大學時 我將主修改為藝術史 透過研究視覺藝術, 我發現我學到一些如何「看」-- 對一個無法改變太多過去 所見的孩子而言 這是非常強而有力的一課 觀點 -- 這種人類可以控制的鍊金術 足以將痛苦轉換為一朵盛開的花
Flash forward: now I work at an amazing place in San Francisco called the Zen Hospice Project, where we have a little ritual that helps with this shift in perspective. When one of our residents dies, the mortuary men come, and as we're wheeling the body out through the garden, heading for the gate, we pause. Anyone who wants -- fellow residents, family, nurses, volunteers, the hearse drivers too, now -- shares a story or a song or silence, as we sprinkle the body with flower petals. It takes a few minutes; it's a sweet, simple parting image to usher in grief with warmth, rather than repugnance. Contrast that with the typical experience in the hospital setting, much like this -- floodlit room lined with tubes and beeping machines and blinking lights that don't stop even when the patient's life has. Cleaning crew swoops in, the body's whisked away, and it all feels as though that person had never really existed. Well-intended, of course, in the name of sterility, but hospitals tend to assault our senses, and the most we might hope for within those walls is numbness -- anesthetic, literally the opposite of aesthetic. I revere hospitals for what they can do; I am alive because of them. But we ask too much of our hospitals. They are places for acute trauma and treatable illness. They are no place to live and die; that's not what they were designed for.
往前快轉:現在我在舊金山 一個很棒的地方工作 叫做《禪安寧照護計畫》 在那裡我們有一個幫助這種 觀點移轉的小小儀式 當我們有一位房客過世 太平間的人來了,而當我們將遺體穿過花園 朝大門前進時,會先暫停一下 任何人,只要他想要 -- 不管是其他房客、家屬、護士、義工 還有靈車司機 -- 都可以分享一個故事、唱一首歌, 或者單純的靜默 就在我們在遺體上撒花瓣時 這會花幾分鐘的時間 這是個甜蜜而簡單的告別象徵, 用溫暖迎接悲痛 而不是厭惡 對比於醫院裡設定的典型體驗 差不多像這樣 -- 泛光照射的房間裡 排滿管線和嗶嗶叫的機器 病患死亡時仍不停閃爍的燈光 清潔人員衝進房間,快速搬走遺體 一切感覺就像這個人不曾真的存在過 無菌考量,當然是個良好意圖 但醫院很容易侵犯我們的感官 在那些生冷的牆壁裡 我們最多能渴望的大概就是麻木 麻木不仁,跟美完全相反 我為醫院能做到的事情尊敬他們; 他們是我還活著的原因 但我們對他們的要求太多了 他們是處理急性創傷和可治癒疾病的地方 而不是處理生死的地方; 他們不是為此設計的
Now mind you -- I am not giving up on the notion that our institutions can become more humane. Beauty can be found anywhere. I spent a few months in a burn unit at St. Barnabas Hospital in Livingston, New Jersey, where I got really great care at every turn, including good palliative care for my pain. And one night, it began to snow outside. I remember my nurses complaining about driving through it. And there was no window in my room, but it was great to just imagine it coming down all sticky. Next day, one of my nurses smuggled in a snowball for me. She brought it in to the unit. I cannot tell you the rapture I felt holding that in my hand, and the coldness dripping onto my burning skin; the miracle of it all, the fascination as I watched it melt and turn into water. In that moment, just being any part of this planet in this universe mattered more to me than whether I lived or died. That little snowball packed all the inspiration I needed to both try to live and be OK if I did not. In a hospital, that's a stolen moment.
現在提醒各位 -- 我並沒有放棄 我們的醫療機構需要更人性化的想法 美好的事物隨處可見 我在燒燙中心裡待了幾個月 在紐澤西利文斯頓的聖巴拿巴醫院裡 在那裡我每次都受到很好的照顧 包含針對疼痛所做的慢性治療 在一個晚上,外面開始下雪 我記得護士們正在抱怨要開車穿越雪地 我的房間沒有窗戶 但光是想像濕軟的雪花落下也很不錯 隔天,其中一個護士 為我偷偷帶進了一個雪球 她將雪球帶進燒燙中心 我無法形容那種歡天喜地的感覺, 就當我感受到它就在我手中 一股股濕冷滴落在我滾燙的皮膚上 那一切奇蹟似的感受 當我看著它融化為水的那種陶醉 在那個時刻 感覺自己屬於這個世界、這個宇宙的任何部分 對我而言,比會活下來還是死掉重要 這顆小小雪球給了我需要的所有激勵 無論是試著活下來還是接受死亡 在醫院裡,那段是被偷走的時刻
In my work over the years, I've known many people who were ready to go, ready to die. Not because they had found some final peace or transcendence, but because they were so repulsed by what their lives had become -- in a word, cut off, or ugly. There are already record numbers of us living with chronic and terminal illness, and into ever older age. And we are nowhere near ready or prepared for this silver tsunami. We need an infrastructure dynamic enough to handle these seismic shifts in our population. Now is the time to create something new, something vital. I know we can because we have to. The alternative is just unacceptable. And the key ingredients are known: policy, education and training, systems, bricks and mortar. We have tons of input for designers of all stripes to work with.
在我多年的工作裡,認識了許多 準備離開、準備好死亡的人 並非找到最後的安寧或超然 而是被他們生命最終變成的樣貌給擊敗 一言以蔽之,隔絕, 醜陋 活在長期病痛或絕症中的人數 已經達到歷史新高 年齡也不斷攀升 我們完全還沒為這個銀色海嘯做好準備 我們需要建立基礎設施 有足夠的動力應付這股 人口結構轉移的震盪 現在正是時候創造一些全新的、 不可或缺的東西 我知道我們可以,因為我們必須這麼做 沒有其他選擇 而廣為人知的重要要素有: 政策、教育和訓練 系統、建築物 我們有以頓計的訊息 可讓各種不同的設計師進行作業
We know, for example, from research what's most important to people who are closer to death: comfort; feeling unburdened and unburdening to those they love; existential peace; and a sense of wonderment and spirituality.
舉例來說,從研究中得知 對接近死亡的人們而言,最重要的是: 舒適;感覺沒有牽掛, 並不再牽累他們所愛的人 心境平靜,感覺美妙和充滿靈性
Over Zen Hospice's nearly 30 years, we've learned much more from our residents in subtle detail. Little things aren't so little. Take Janette. She finds it harder to breathe one day to the next due to ALS. Well, guess what? She wants to start smoking again -- and French cigarettes, if you please. Not out of some self-destructive bent, but to feel her lungs filled while she has them. Priorities change. Or Kate -- she just wants to know her dog Austin is lying at the foot of her bed, his cold muzzle against her dry skin, instead of more chemotherapy coursing through her veins -- she's done that. Sensuous, aesthetic gratification, where in a moment, in an instant, we are rewarded for just being. So much of it comes down to loving our time by way of the senses, by way of the body -- the very thing doing the living and the dying.
在《禪安寧療護》的近30年裡 我們從房客一些細微的瑣事中學到許多 這些小事其實不小 就拿珍妮特來說 由於患有漸凍人症(ALS), 她發現一天比一天難以呼吸 猜猜怎麼樣? 她想要再次開始抽菸 而且是法國菸,如果可以的話 並不是因為她有自我毀滅的傾向 而是想在她失去她的肺之前, 感覺裡面被充滿 優先次序有所不同了 或是凱特 -- 她只想知道 她的狗奧斯丁是否躺在床尾 用冷冷的口鼻貼在她乾燥的皮膚上 而不是更多化療的液體在靜脈裡流竄 那些她經歷過了 感官與美的滿足,在那一刻 立即變成我們活著的獎勵 我們能用來珍愛剩餘時間的方式, 最終大多只剩下感官 或者身體 -- 千真萬確經歷活著和死亡的東西
Probably the most poignant room in the Zen Hospice guest house is our kitchen, which is a little strange when you realize that so many of our residents can eat very little, if anything at all. But we realize we are providing sustenance on several levels: smell, a symbolic plane. Seriously, with all the heavy-duty stuff happening under our roof, one of the most tried and true interventions we know of, is to bake cookies. As long as we have our senses -- even just one -- we have at least the possibility of accessing what makes us feel human, connected. Imagine the ripples of this notion for the millions of people living and dying with dementia. Primal sensorial delights that say the things we don't have words for, impulses that make us stay present -- no need for a past or a future.
《禪安寧療護》的客房裡 氣味最濃烈的地方大概就是廚房了 這有點奇怪,如果你發現 我們許多房客就算能進食,也非常少量 但我們意識到,其實在許多層面上 我們都在提供維持生計的東西 例如氣味,非常象徵性的層面 說認真的,在我們的許多重責大任之中 其中一項最常用、最真切的治療方式 就是烘焙餅乾 只要我們還擁有感官 -- 儘管只有任何一種 -- 就至少還有機會接近 感覺自己還像個人、和世界連結 想像一下這個觀點的效應: 幾百萬人在失智症中經歷生死的轉換 最原始的感官上的愉悅, 說明了我們無法形容的事 一股讓我們把注意力放在現在的衝動 無需在意過去或未來
So, if teasing unnecessary suffering out of the system was our first design cue, then tending to dignity by way of the senses, by way of the body -- the aesthetic realm -- is design cue number two. Now this gets us quickly to the third and final bit for today; namely, we need to lift our sights, to set our sights on well-being, so that life and health and healthcare can become about making life more wonderful, rather than just less horrible. Beneficence.
所以,如果把不必要的痛苦 從醫療體系中抽離是第一個設計提示 那麼在感官上、身體上顧到人們的尊嚴 -- 達到美的境界 -- 則是我們的第二個設計提示 這也快速帶到了第三個設計提示, 也是今天最後一個段落 也就是,我們需要提高眼界, 將其放在人們的福祉上 那麼生命健康和醫療照護 就能變成讓生命更美好 而不是比較不恐怖 一種慈善
Here, this gets right at the distinction between a disease-centered and a patient- or human-centered model of care, and here is where caring becomes a creative, generative, even playful act. "Play" may sound like a funny word here. But it is also one of our highest forms of adaptation. Consider every major compulsory effort it takes to be human. The need for food has birthed cuisine. The need for shelter has given rise to architecture. The need for cover, fashion. And for being subjected to the clock, well, we invented music. So, since dying is a necessary part of life, what might we create with this fact? By "play" I am in no way suggesting we take a light approach to dying or that we mandate any particular way of dying. There are mountains of sorrow that cannot move, and one way or another, we will all kneel there. Rather, I am asking that we make space -- physical, psychic room, to allow life to play itself all the way out -- so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end. We can't solve for death. I know some of you are working on this.
這會是以疾病為核心和以人為核心 兩種醫療模式之間的區別 也會讓醫療變成一種有創意、有生產力 甚至好玩的實踐 「玩」這個聽起來像個有趣的詞語 但它也是適應的一種最高境界 想想人類所有不可或缺的創作成果 我們對食物的需求催生了料理 對遮風避雨的需求造成了建築 對遮蔽身體的需求帶來時尚 而因為備受時間的摧殘 我們發明了音樂 所以,既然死亡是生命中必然的部分 我們能為它創造什麼呢? 我所謂「好玩」,並不是建議我們 選個輕快有趣的方式死亡 或是指定某種特定的死亡方式 有許多的悲傷是我們無法挪走的 無倫如何,我們都得向它屈服 相反地,我是希望大家給它一點空間 -- 實體和心靈上的空間, 讓生命可以自己一路享受到最後 而不是就這樣被拖離 老化和臨終可以變成一段 漸強直至高潮的旋律 我們無法終結死亡 我知道你們有些人正在嘗試
(Laughter)
(笑聲)
Meanwhile, we can --
但這麼做的同時,我們還可以--
(Laughter)
(笑聲)
We can design towards it. Parts of me died early on, and that's something we can all say one way or another. I got to redesign my life around this fact, and I tell you it has been a liberation to realize you can always find a shock of beauty or meaning in what life you have left, like that snowball lasting for a perfect moment, all the while melting away. If we love such moments ferociously, then maybe we can learn to live well -- not in spite of death, but because of it. Let death be what takes us, not lack of imagination.
我們還是可以針對死亡進行設計 早些年,部分的我已經死去 --不管怎樣,我們都可以這麼說-- 而我需要針對這個事實 重新設計我的生命 告訴你們,那是個解放 當你意識到, 你永遠能在留下的生命裡 找到美好事物與意義的驚喜 就像那顆雪球存在的完美時刻 還有整個它融化的時刻 如果我們能熱愛這樣的時刻 或許我們就能學會活得精彩-- 不是無視死亡所以活得精采 而是因為死亡而活得精彩 讓死亡成為可以引領我們 而非不去想像的東西
Thank you.
謝謝各位
(Applause)
(掌聲)