在生命的盡頭你想要什么演講稿

時間：2021-01-05 18:02:50 演講稿我要投稿

在生命的盡頭你想要什么演講稿

　　Well, we all need a reason to wake up. For me, it just took 11,000 volts.

在生命的盡頭你想要什么演講稿

　　I know you're too polite to ask, so I will tell you.

　　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!

　　My father wears it now in solidarity.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　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.

　　Meanwhile, we can --

　　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.

　　Thank you.

　　中文演講稿

　　我們都需要一個醒來的理由。對我來說是11,000伏特。

　　我知道你們太禮貌了不會過問，那就讓我告訴你們。

　　在大學二年級，感恩節假期后的一天晚上，我和幾個朋友鬧著玩兒，決定爬到一列停在一旁的通勤列車頂上。它就停在那兒，纜線就在車頂上方。不知為什么，這似乎在那個時候是一個好主意。我們的確干過比這個還傻的事。我從后面的梯子竄了上去，當我站起來的時候，一股電流進入了我的手臂，一直到我的腳下然后就這樣了。你能相信那塊手表還沒壞嗎? 真是金剛不壞!

　　我的父親現在還一直戴著那塊手表。

　　那天晚上開啟了我和死亡正式的關系——我的死亡—— 也開始了我作為病人的漫長的旅程。這是一個很合適的詞。它的意思是一個受苦的人。我想我們應該都是病人吧。

　　美國的醫療保健系統有不少的功能障礙—— 當然，它也有杰出的方面。我現在是一名醫生，安寧病房和臨終關懷醫生，所以我從兩個角度看醫療系統。相信我：幾乎每一個從事醫療的人都是十分好心的——是真的。但是我們這些從事醫療的人也是在一個有許多缺陷的系統中工作。

　　為什么呢? 其實有一個很簡單的答案，而且也能反映很多事情：因為醫療系統的設計是針對疾病的，而病人不是焦點，也就是說這個設計是有問題的。而在生命的盡頭，不良的設計的影響更加讓人心痛，完善的設計的機會也顯得更有必要，因為在生命的盡頭，所有的東西都是濃縮下來的精華。沒有重新來過的機會。

　　我今天的目的就是號召各個領域的人們，邀請大家把設計思維帶入這個大話題中。也就是將好意和創意帶入瀕死的經歷。這是一個十分難得的機會，這是一個會影響到個人，以及整個社會的普遍問題之一：重新思考并設計我們如何面對死亡。

　　我們從終點開始談起。對大多數人來說，變成死人并不是死亡最可怕的部分，最可怕的是垂死，病痛。這是一個關鍵的區別。為了更好地領會這一切，那就非常有必要區分一下死亡無法避免的痛苦和我們可以改變的痛苦。前者是一個自然的，生命中必不可少的一部分，于是我們為自己預留空間，調整，成長。能夠認識到有比自己更強大的力量是件好事。這能夠帶給我們均衡性，一個全新的自我認識。在我失去肢體之后，這個損失變成了一個事實，無法改變—— 這變成了我生活中的一部分，我認識到抵觸這個事實就是在抵觸自己。過了一段時間，我才最終認識到這一點。這種不可避免的痛苦的另一個好處是它最能夠團結照顧者和被看護者—— 增進人與人之間的關系。我們意識到這就是痊愈的開始。是的，同情——就像我們昨天所學的—— 一起承擔。

　　從另一方面，從醫療系統的角度來看，有許多痛苦都是沒有必要的，制造出來的。沒有任何意義。但是好消息是：既然這種痛苦是人為造成的，那我們就可以改變它。如何死亡確實是我們可以改變的。讓整個系統辨別不可避免的痛苦和沒有必要的痛苦之間的最基本的區別給予了我們三個中第一個的設計暗示。畢竟我們作為照顧者的角色，照顧病人是去減輕他的痛苦，而不是雪上加霜。

　　這是緩和醫療的原則，我的職責就是當一個支持者，就像一個處方醫生一樣。順便提一下：緩和醫療——是一個非常重要的工作領域，但是經常被誤解—— 它涵蓋，但不僅限于病人臨終前。不僅限于安寧病房。而是在任何一個階段都有舒適的生活品質。所以不一定是在病人臨終前才能得到安寧緩和醫療。

　　現在，讓我給你們介紹一下弗蘭克。他可以證明這一點。我照顧弗蘭克好多年了。他患有前列腺癌，外加艾滋病。我們針對治療他的骨痛和疲倦問題，但是我們大多時間都在一起思考他的人生—— 其實，就是我們的人生。弗蘭克用這種方法表達他的悲痛。他用這種方法面對他所失去的一切，這樣他才能去面對下一個難題。失去是一回事兒，而后悔是另一回事兒。弗蘭克一直是一個探險家—— 他看上去像諾曼·洛克威爾的畫里的人物—— 他從不后悔。所以我一點都不驚訝有一天他來到診所，跟我說他想泛竹筏從科羅拉多河順流而下。這是一個好主意嗎? 考慮到他的人身安全和健康情況，有些人會說這不行。很多人都這么說，但是他依舊去了，趁他還有能力去的時候。那是一個美好，奇妙的旅程：冰涼的水，干熱的酷暑，蝎子，蛇，大峽谷似火的巖壁上各種野生動物的嚎叫—— 都是我們無法控制的世界的壯麗的一面。弗蘭克的決定，或許有些戲劇性，但是如果我們有我們所需要的支持，去尋找做最有利于自己的選擇，那我們大多數人可能都會做出這樣的選擇。

　　今天聊到的許多都是從不同角度看問題。在我的事故發生之后，我回到了大學，我把我的主修改成了藝術史。在學習視覺藝術的過程中，我發現我學會了如何去觀察—— 對于一個無法改變過去所見的孩子來說，那是強有力有的一課。觀點是一種人們可以改變的煉金術，可以把煎熬變成花朵。

　　往前快進：現在我在舊金山一個很棒的地方工作，叫做禪宗安寧病房項目。在那里我們會舉行一個小儀式幫助我們換一個角度看問題。當我們的一個病人去世后，太平間的人會來，當我們推他的遺體車穿過花園時，在大門前，我們會停留片刻。任何人—— 其他的住客，家人，護士，志愿者，還有靈車司機—— 如果他們愿意，他們會分享一段故事，一首歌，或者簡單的沉默，同時，我們在遺體上撒花瓣; 只有幾分鐘的時間; 這是個很美好，簡單的告別場景，用溫暖迎接悲痛，而不是厭惡。把這個和普通的醫院中的環境對比，差不多跟這個一樣——燈光照明的房間中排滿各種管子和嘟嘟叫的機器，還有不停閃爍的燈光，盡管病人的生命已經停止了。清理人員立即進來，遺體被快速地接走，然后就好像那個人從來沒有存在過似的。從衛生角度考慮，他們的做法當然有道理，但是醫院很容易侵犯我們的感官，在那四面墻內，我們最多也只能期盼麻木—— 麻木不仁，字面意思上和美感完全相反。我敬仰醫院所做的一切，因為有它們我現在還活著。但是我們對醫院的要求太高了。它們是處理急性創傷和可治療疾病的地方。它們不是應對生死的地方; 它們不是為這個而設計的。

　　提醒一下——我并沒有放棄把我們的醫療機構變得更加人性化的想法。任何地方都有美好的事物。我在在新澤西州利文斯頓的圣巴納巴斯醫院燒傷科呆了幾個月。我在那里得到無微不至的照顧，包括針對我的病痛的緩和治療。、有一天晚上，外面開始下雪。我記得我的護士抱怨在雪天開車。我的房間沒有窗戶，但是能想象迷漫的雪花也很好。第二天，有一個護士為我偷偷地帶進來一個雪球。她把雪球帶到燒傷中心里面。我無法描述我用手捧著雪球那種欣喜若狂的感覺，一股股寒意滴在我滾燙的皮膚上; 這一切有多么神奇，我入迷地看著它融化成水。在那一刻，能夠屬于這個星球上，這個宇宙中任何一個部分對我來說比我的生與死還要重要。那個小小的雪球包含了一切我所需要的鼓舞，無論我試著活下去，還是接受死亡都可以接受。在醫院里，那是我珍藏的一段回憶。

　　在我多年的工作中，我結交了許多愿意離開，準備好接受死亡的人。并不是因為他們找到了最終的安樂或者超越，而是因為他們被他們生命中的轉折擊退了—— 有一個詞，也就是隔絕，丑陋。生活在長期病痛中和患有絕癥的人已經是歷史新高了，年齡也不斷攀升。而我們絲毫沒有準備好迎接這個銀色海嘯。我們需要一個有足夠動力的基礎設施去應對這些人口比例的重大變化。現在正是時候去創造一個全新的，重要的系統。我知道我們可以成功，因為我們必須要這么做。我們沒有選擇的余地。而且，我們已經把握住關鍵的因素了：政策，教育和訓練，系統，磚塊和砂漿。我們有無數的信息可以供設計師參考搭建。

　　比如說，從調查研究中，我們可以得知對于臨終的人而言，什么更加重要：舒適;沒有任何負擔，也不牽累他們愛的人; 心境平靜;充滿感嘆和靈性的感覺。

　　在禪宗安寧病房將近30年的歷史中，我們從我們的住客的微妙的細節中學到了很多。有些東西沒有它看上去那么小。拿珍妮特舉例。因為她患有漸凍人癥，每一天她的呼吸都會變得更加困難。你們猜怎么樣? 她又開始想抽煙了—— 還是法國香煙，如果可以的話。并不是因為自我摧殘的傾向，而是想在她還有肺的`時候，去感受她的肺被充滿的感覺。優先順序不同了。還有凱特——她只想感受著她的狗狗奧斯丁躺在她的床腳，他冷冷的鼻子貼著她干燥的皮膚，而不是讓更多的化療流淌在她的血液中—— 她已經經歷過了。在一剎那間，能夠感受到美感的滿足立刻成為我們活著的獎勵。這種感覺在我們珍愛的時間中通過感官和我們的身體—— 也就是正在經歷生命和死亡的東西。

　　也許在禪宗安寧病房中最凄涼的地方是我們的廚房，你肯定覺得這有點奇怪，因為有許多住在病房中的人就算能進食，也只能很少量。但是我們意識到這樣可以在許多層面上給他們提供支持：比如嗅覺，一個象征性的平面。真的，在我們的病房中所有的重大責任中，其中我們所知的嘗試過多次，也是最真切的治療方法，是烘焙餅干。只要我們還有感官—— 哪怕只有一個—— 我們至少還有可以接觸人性的感覺，和世界連接。對于全世界數百萬的與癡呆癥生死搏斗的人來說，我們可以想象一下這個觀點的效應。最原始的感官上的愉悅是我們無法用語言描述的，是使我們珍惜當下的沖動—— 不需要回到過去或者展望未來。

　　如果把不必要的痛苦從系統中剔除是我們的第一個設計提示的話，那么給予人們感官上的，身體上的尊嚴—— 美感的境界—— 則是我們的第二個設計提示。這也把我們帶到今天第三個和最后一個部分; 也就是，我們需要提高眼界，把重點放在人們的福祉上，為的是生命，健康和醫療可以使生活變得更加美好，而不只是少幾分可怕。慈善。

　　區別就在這兒，在一個以疾病為核心和一個以人為核心的醫療模式之間，在這兒，醫療變成了一種有創意、生產力，甚至好玩的舉動。 "玩"在這里是一個很有趣的詞。但它也是我們適應的最高境界之一。想一想人類每一個不可缺少的需求。我們對食物的需求帶來了烹飪。我們對遮風避雨的需求構成了建筑。我們對遮蔽身體的需求促成了時尚。而因為我們要服從于時間，我們發明了音樂。那么，既然死亡也是生命中必不可少的一部分，我們又能創造出什么呢? 說到"玩"，我決不是在提議我們輕視死亡或者指定某種特定的死亡方式。有許多悲傷是我們無法消除的，無論如何，我們都會屈服于它的。我只是希望大家可以創造一點空間—— 生理和心理上的空間，讓生命自己走完它的路—— 而不是把它趕走，衰老和臨終可以變成一個漸強的過程一直到結尾。我們無法避免死亡。我知道你們有些人在嘗試。

　　在此同時，我們可以——

　　我們可以針對死亡做設計。我的一部分很早以前就已經死了，不管怎么說，事實就是這樣。但是我針對這個事實重新設計了我的人生，當你意識到你在生命中永遠可以找到美好的事物和有意義的事情時，我可以告訴你們這是一種解放。就像那個停留在完美的一瞬間的雪球，同時一直在融化。如果我們能夠拼盡全力去愛那些片刻，也許我們就能學會如何活得更加精彩—— 不是不顧死亡而活得精彩，而是因為死亡而活得精彩。可以讓死亡奪走我們的生命，但別讓它帶走我們的想象力。

　　謝謝

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