A few days after my husband Paul was diagnosed with stage IV lung cancer,we were lying in our bed at home, and Paul said, It’s going to be OK. And I remember answering back, Yes. We just don’t know what OK means yet.
就在我的丈夫Paul被確診為肺癌晚期的幾天后，我們躺在臥室里，Paul說(shuō)，一切都會(huì)變好的。我記得我回答說(shuō)米苹，是的。我們只是還不知道變好的意思砰琢。
Paul and I had met as first-year medical students at Yale. He was smart and kind and super funny. He used to keep a gorilla suit in the trunk of his car, and he’d say, It’s for emergencies only.
我跟Paul是在耶魯醫(yī)學(xué)院讀第一年時(shí)認(rèn)識(shí)的蘸嘶。他聰明、友善陪汽、超級(jí)有幽默感训唱。他常年在車(chē)?yán)锏暮髠湎浞胖患笮尚煞f(shuō)挚冤，“以備不時(shí)之需雪情。”
I fell in love with Paul as I watched the care he took with his patients. He stayed late talking with them, seeking to understand the experience of illness and not just its technicalities.He later told me he fell in love with me when he saw me cry over an EKG of a heart that had ceased beating. We didn’t know it yet,but even in the heady days of young love, we were learning how to approach suffering together.
我在目睹了他細(xì)心照顧他的患者之后便愛(ài)上了他你辣。他跟患者可以聊到很晚巡通，希望能夠理解疾病帶來(lái)的感觸，而不僅僅是技術(shù)層面的細(xì)節(jié)舍哄。他后來(lái)告訴我宴凉，從他看到我面對(duì)著一份停止跳動(dòng)的心電圖哭泣那刻就愛(ài)上我了。我們那時(shí)不知道表悬，早在我們尚未墜入愛(ài)河之前弥锄，我們就已經(jīng)在學(xué)習(xí)如何共同承擔(dān)痛苦。
We got married and became doctors. I was working as an internist and Paul was finishing his training as a neurosurgeon when he started to lose weight. He developed excruciating back pain and a cough that wouldn’t go away.And when he was admitted to the hospital, a CT scan revealed tumorsin Paul’s lungs and in his bones. We had both cared for patients with devastating diagnoses; now it was our turn.
我們結(jié)婚了，畢業(yè)后都當(dāng)了醫(yī)生籽暇。我選擇了當(dāng)內(nèi)科醫(yī)生温治，Paul當(dāng)時(shí)即將結(jié)束神經(jīng)外科的訓(xùn)練課程，但他的體重也開(kāi)始往下掉戒悠。他的后背逐漸開(kāi)始疼痛熬荆，咳嗽總是不見(jiàn)好。當(dāng)他被收治住院時(shí)绸狐，CT顯示腫瘤已經(jīng)遍布他的肺和骨頭卤恳。我們都細(xì)心照顧過(guò)各種身患重大疾患的病人，現(xiàn)在輪到我們了寒矿。
We lived with Paul’s illness for 22 months. He wrote a memoir about facing mortality. I gave birth to our daughter Cady, and we loved her and each other. We learned directly how to struggle through really tough medical decisions. The day we took Paul into the hospital for the last time was the most difficult day of my life.
我們跟Paul的癌癥抗?fàn)幜?2個(gè)月突琳。他寫(xiě)了一本回憶錄，記錄面對(duì)死亡的感受符相。我們的女兒Cady順利出生拆融。我們愛(ài)她，愛(ài)彼此啊终。我們學(xué)會(huì)了如何面對(duì)各種艱難的醫(yī)學(xué)選擇冠息。Paul最后一次收治住院那天，對(duì)于我而言是最艱難的一天孕索。
When he turned to me at the end and said, I’m ready, I knew that wasn’t just a brave decision. It was the right one. Paul didn’t want a ventilator and CPR. In that moment, the most important thing to Paul was to hold our baby daughter. Nine hours later, Paul died.
當(dāng)他在最后的時(shí)刻，看著我躏碳，說(shuō)搞旭，“我準(zhǔn)備好了」矫啵”我明白肄渗，那不僅是勇敢的選擇，也是正確的選擇咬最。Paul并不想要呼吸機(jī)和心肺復(fù)蘇翎嫡，在那一刻，對(duì)于Paul而言最重要的事情是抱著我們襁褓中的女兒永乌。九個(gè)小時(shí)之后惑申，Paul走了。
I’ve always thought of myself as a caregiver —most physicians do —and taking care of Paul deepened what that meant. Watching him reshape his identity during his illness, learning to witness and accept his pain, talking together through his choices —those experiences taught methat resilience does not mean bouncing back to where you were before, or pretending that the hard stuff isn’t hard. It is so hard. It’s painful, messy stuff. But it’s the stuff. And I learned that when we approach it together, we get to decide what success looks like.
我一直認(rèn)為自己是一名照料者——就像其他醫(yī)生一樣——而照顧Paul的經(jīng)歷讓我對(duì)于照料者的理解更深刻翅雏。目睹他在跟病魔斗爭(zhēng)的過(guò)程中對(duì)自己的重塑圈驼，學(xué)會(huì)見(jiàn)證和接受他的痛苦，跟他一起接受他的選擇——這些經(jīng)歷讓我學(xué)會(huì)了堅(jiān)強(qiáng)并不意味著回到過(guò)去的自己望几，或假裝那些很痛苦的事情沒(méi)什么大不了的绩脆。太艱難了。過(guò)程充滿痛苦，讓人傷透腦筋靴迫。但是就是這個(gè)過(guò)程惕味。我知道了當(dāng)我們一起努力，我們就能知道成功是什么樣子玉锌。
One of the first things Paul said to me after his diagnosis was, I want you to get remarried. And I was like, whoa, I guess we get to say anything out loud.
當(dāng)他的診斷結(jié)果出來(lái)后名挥，他對(duì)我說(shuō)的第一句話是，“我希望你能再嫁芬沉√赏”我當(dāng)時(shí)想，哇丸逸，我覺(jué)得我們當(dāng)時(shí)什么都敢說(shuō)了蹋艺。
It was so shockingand heart breaking ...and generous,and really comfortingbecause it was so starkly honest,and that honesty turned out to be exactly what we needed.Early in Paul’s illness,we agreed we would just keep saying things out loud.Tasks like making a will,or completing our advance directives —tasks that I had always avoided —were not as daunting as they once seemed.
非常的震驚，令人心碎——同時(shí)也是一種大度黄刚，同時(shí)也非常舒心捎谨，因?yàn)槲覀兺耆恼\(chéng)實(shí)，這種誠(chéng)實(shí)正是我們最需要的憔维。在Paul患病的早期涛救，我們商量好，我們什么事情都敞開(kāi)說(shuō)业扒。像是立遺囑這樣的事情检吆，完成預(yù)留醫(yī)療指示（ADS）——（譯注：?jiǎn)适е饔^意識(shí)時(shí)的醫(yī)護(hù)指示）那些我一直逃避的事情——當(dāng)真正面對(duì)時(shí)并沒(méi)有那么可怕。
I realized that completing an advance directive is an act of love —like a wedding vow. A pact to take care of someone, codifying the promise that til death do us part,I will be there.If needed, I will speak for you. I will honor your wishes. That paperwork became a tangible part of our love story.
我意識(shí)到預(yù)留醫(yī)療指示（ADS）是一種愛(ài)的舉動(dòng)——就像是婚禮上的誓言程储。一種照料對(duì)方的契約蹭沛，將誓言銘刻下來(lái)直到生死相隔，我永不言棄章鲤。我會(huì)在需要時(shí)為你表達(dá)你的意愿摊灭。我會(huì)完成你的愿望。這個(gè)法律文書(shū)成為我們愛(ài)情故事的見(jiàn)證败徊。
As physicians, Paul and I were in a good position to understand and even accept his diagnosis. We weren’t angry about it, luckily,because we’d seen so many patient sin devastating situations, and we knew that death is a part of life.But it’s one thing to know that; it was a very different experience to actually live with the sadness and uncertainty of a serious illness. Huge strides are being made against lung cancer, but we knew that Paul likely had months to a few years left to live.
作為醫(yī)生帚呼，我跟Paul都有充分的心理準(zhǔn)備去理解，甚至接受診斷結(jié)果皱蹦。我們并沒(méi)有感到憤怒煤杀，很幸運(yùn)，因?yàn)槲覀冊(cè)缇湍慷锰辔Ｖ氐牟∪嘶Σ福覀冎懒洌溃巧囊徊糠址锎帧５撬址海蟮览碚l(shuí)都知道今豆；當(dāng)真的自己遇到的時(shí)候，親身經(jīng)歷悲傷和不確定性是完全不同的體驗(yàn)柔袁。肺癌的治療方法效果很好呆躲，但是我們知道Paul的預(yù)期壽命只有幾年，甚至幾個(gè)月捶索。
During that time, Paul wrote about his transition from doctor to patient. He talked about feeling like he was suddenly at a crossroads,and how he would have though the’d be able to see the path, that because he treated so many patients, maybe he could follow in their footsteps.
在那段時(shí)間插掂，Paul記錄了他從醫(yī)生到病人的轉(zhuǎn)變，他談到了突然感覺(jué)自己站在了十字路口腥例，以及他是如何以為自己能看清道路辅甥，因?yàn)樗呀?jīng)幫助過(guò)那么多病人，或許他可以追蹤他們的腳步燎竖。
But he was totally disoriented. Rather than a path,Paul wrote,I saw insteadonly a harsh, vacant, gleaming white desert. As if a sandstorm had erased all familiarity. I had to face my mortality and try to understand what made my life worth living, and I needed my oncologist’s help to do so.
但是他徹底的迷失了方向璃弄。根本不是一條路，Paul寫(xiě)到构回，“我看到的是只有一片荒蕪夏块、空虛、泛著光的白色的沙漠纤掸。就像是一場(chǎng)沙塵暴將所有熟悉的東西都刮跑了脐供。我必須面對(duì)我將死的事實(shí)，嘗試搞清楚如何能夠活得有意義借跪，我需要我的腫瘤醫(yī)生幫助我政己。”
The clinicians taking care of Paulgave me an even deeper appreciation for my colleagues in health care. We have a tough job. We’re responsible for helping patients have clarity around their prognosesand their treatment options, and that’s never easy, but it’s especially toughwhen you’re dealing with potentially terminal illnesses like cancer.
臨床醫(yī)生們對(duì)Paul的照料讓我對(duì)于我醫(yī)療界的同事有了更深的感激掏愁。我們的工作很難歇由。我們有責(zé)任幫助患者清楚的知道預(yù)期后果以及他們治療的選擇，這向來(lái)不是簡(jiǎn)單的事情托猩，尤其是處理癌癥等不治之癥的時(shí)候，選擇更加的艱難辽慕。
Some people don’t want to know how long they have left, others do. Either way, we never have those answers. Sometimes we substitute hopeby emphasizing the best-case scenario. In a survey of physicians, 55 percent said they painted a rosier picture than their honest opinion when describing a patient’s prognosis.
有些人愿意不去知道還有多少時(shí)日京腥，有的人想知道。無(wú)論哪種溅蛉，我們都不知道答案的公浪。有時(shí)候我們會(huì)強(qiáng)調(diào)最好的可能性，以期讓希望顯得更大一些船侧。一次面向醫(yī)生的調(diào)查中欠气，55%的醫(yī)生說(shuō)當(dāng)他們跟病人描述預(yù)后時(shí)，相比于他們真實(shí)的意見(jiàn)镜撩，他們會(huì)嘗試說(shuō)得更有希望一些预柒。
It’s an instinct born out of kindness. But researchers have found that when people better understand the possible outcomes of an illness, they have less anxiety, greater ability to planand less trauma for their families.
這是一種出于本能的友善。但是研究人員發(fā)現(xiàn)當(dāng)患者能夠更好的理解疾病的預(yù)期后果時(shí)，他們的焦慮更少宜鸯，更有可能好好規(guī)劃憔古，并可能減少給家庭帶來(lái)的傷痛。
Families can struggle with those conversations, but for us, we also found that information immensely helpful with big decisions. Most notably,whether to have a baby. Months to a few years meant Paul was not likely to see her grow up. But he had a good chance of being there for her birthand for the beginning of her life.
一個(gè)家庭在討論這類話題時(shí)可能非常痛苦淋袖，但是我們同樣發(fā)現(xiàn)在做重大決策時(shí)真實(shí)信息的重要性鸿市。最重要的是，要不要生孩子即碗。只有不到一兩年的預(yù)期壽命意味著Paul無(wú)法看到女兒長(zhǎng)大焰情。但是他能夠有機(jī)會(huì)看到女兒的出生并在生命開(kāi)始的時(shí)候陪伴左右试溯。
I remember asking Paulif he thought havingto say goodbye to a child would make dying even more painful. And his answer astounded me. He said,Wouldn’t it be great if it did? And we did it. Not in order to spite cancer, but because we were learningthat living fully means accepting suffering.
我記得問(wèn)過(guò)Paul要跟一個(gè)襁褓中的孩子告別會(huì)不會(huì)讓死亡更加痛苦贤姆。他的回答震撼了我。他說(shuō)脐往，“真能這樣蕊肥，難道不會(huì)更好么谒获？”于是我們懷孕了。并不是為了跟癌癥斗爭(zhēng)壁却，而是因?yàn)槲覀儗W(xué)會(huì)了有意義的生活批狱，包括了接受苦難。
Paul’s oncologist tailored his chemoso he could continue working as a neurosurgeon, which initially we thought was totally impossible. When the cancer advancedand Paul shifted from surgery to writing, his palliative care doctor prescribed a stimulant medicationso he could be more focused. They asked Paul about his priorities and his worries. They asked him what trade-off she was willing to make. Those conversations are the best way to ensure that your health care matches your values.
Paul的腫瘤醫(yī)生適量減少了他化療的劑量這樣他依然可以從事神經(jīng)外科手術(shù)展东，這在一開(kāi)始我們覺(jué)得是完全不可能的赔硫。當(dāng)癌癥進(jìn)一步加重時(shí)Paul放下了手術(shù)刀，拿起了筆盐肃，他的姑息療法醫(yī)生給他開(kāi)了興奮類的藥物爪膊，這樣他可以更加專注。他們?cè)儐?wèn)了Paul在意的事情和擔(dān)心的事情砸王。他們?cè)儐?wèn)了他在一些問(wèn)題上的取舍推盛。這些談話是確保你的醫(yī)療計(jì)劃符合你的預(yù)期的最好方式。
Paul joked that it’s not like that birds and bees talk you have with your parents, where you all get it over with as quickly as possible, and then pretend it never happened. You revisit the conversationas things change.
Paul開(kāi)玩笑說(shuō)谦铃，這跟你的父母跟你談?wù)撚嘘P(guān)性的話題是不一樣的耘成，這種談話你總想盡早結(jié)束，然后假裝從沒(méi)發(fā)生過(guò)驹闰。當(dāng)事情變化時(shí)你會(huì)回過(guò)頭來(lái)回顧這些談話瘪菌。
You keep saying things out loud. I’m forever gratefulbecause Paul’s clinicians feltthat their job wasn’t to try to give us answers they didn’t have, or only to try to fix things for us, but to counsel Paul through painful choices ...when his body was failing but his will to live wasn’t.
你堅(jiān)持說(shuō)出真實(shí)感受。我會(huì)永遠(yuǎn)感激Paul的臨床醫(yī)生們嘹朗，他們并不覺(jué)得他們的工作是提供他們不知道的答案或僅僅是幫我們修復(fù)什么東西师妙，而是在Paul面對(duì)痛苦的選擇時(shí)提供咨詢建議…他的身體逐漸垮下去的時(shí)候，他的精神依然矍鑠屹培。
Later, after Paul died, I received a dozen bouquets of flowers, but I sent just one ...to Paul’s oncologist, because she supported his goalsand she helped him weigh his choices. She knew that living means more than just staying alive.
在Paul死后默穴，我收到了很多花束怔檩，而我送出了一束…給Paul的腫瘤醫(yī)生，因?yàn)樗秊镻aul的目標(biāo)提供支持并幫助他權(quán)衡可能的選擇壁顶。她知道生活并不僅僅意味著活著珠洗。
A few weeks ago, a patient came into my clinic. A woman dealing with a serious chronic disease. And while we were talking about her life and her health care,she said, I love my palliative care team. They taught me that it’s OK to say ’no’. Yeah, I thought, of course it is. But many patients don’t feel that. Compassion and Choices did a study where they asked people about their health care preferences. And a lot of people started their answers with the words Well, if I had a choice ...If I had a choice.
幾周前，一位患者來(lái)到我的診所若专。是一位患有嚴(yán)重慢性病的女士许蓖。當(dāng)我們討論她的生活和醫(yī)療計(jì)劃時(shí)，她提到调衰，“我愛(ài)我的姑息治療小組膊爪。他們讓我知道是完全可以說(shuō)‘不’的『坷颍”對(duì)呀米酬，我想，當(dāng)然了趋箩。但是很多患者沒(méi)有意識(shí)到這點(diǎn)赃额。“熱情和選擇”組織做過(guò)調(diào)查叫确，調(diào)查內(nèi)容是詢問(wèn)人們的醫(yī)療健康偏好跳芳。很多人開(kāi)始回答都是以“如果我有選擇的話…”開(kāi)頭。如果我有選擇竹勉。
And when I read that if, I understood betterwhy one in four peoplereceives excessive or unwanted medical treatment, or watches a family member receive excessive or unwanted medical treatment. It’s not because doctors don’t get it. We do. We understand the real psychological consequenceson patients and their families. The things is, we deal with them, too.
但我讀到那個(gè)“如果”飞盆，我更加理解為什么四分之一的人被過(guò)度醫(yī)療了，或者目睹家庭成員被過(guò)度醫(yī)療次乓。并不是因?yàn)獒t(yī)生不知道吓歇。我們知道。我們知道這些對(duì)于患者和家庭而言帶來(lái)的真實(shí)的心理上的后果票腰。問(wèn)題是城看，我們也有困擾要處理。
Half of critical care nurses and a quarter of ICU doctorshave considered quitting their jobsbecause of distress over feeling that for some of their patients, they’ve provided care that didn’t fit with the person’s values. But doctors can’t make sure your wishes are respected until they know what they are.
一半的重癥監(jiān)護(hù)護(hù)士和1/4的ICU醫(yī)生考慮過(guò)換工作杏慰，因?yàn)橛袝r(shí)候他們提供的幫助并不符合患者的訴求测柠，這種感覺(jué)讓他們感覺(jué)到很痛苦。但是只有當(dāng)醫(yī)生知道你的愿望究竟是什么逃默，才有可能確認(rèn)它們得到了尊重鹃愤。
Would you want to be on life support if it offered any chance of longer life? Are you most worried about the quality of that time,rather than quantity? Both of those choices are thoughtful and brave,but for all of us, it’s our choice.That’s true at the end of lifeand for medical care through out our lives.
你是否愿意通過(guò)生命維持裝置延續(xù)你的生命簇搅？那時(shí)你是否更加關(guān)注生活質(zhì)量完域，而不是生命的長(zhǎng)度？?jī)煞N選擇都是勇敢且睿智的瘩将，對(duì)我們而言吟税，這是我們的選擇凹耙。這對(duì)于我們的臨終醫(yī)療以及我們?nèi)粘５尼t(yī)療服務(wù)都是如此。
If you’re pregnant, do you want genetic screening? Is a knee replacement right or not?Do you want to do dialysisin a clinic or at home? The answer is:it depends. What medical care will help youlive the way you want to? I hope you remember that questionthe next time you facea decision in your health care. Remember that you always have a choice, and it is OK to say no to a treatment that’s not right for you.
如果你懷孕了肠仪，你想做基因篩查么肖抱？要不要更換膝關(guān)節(jié)？你希望在家還是在診所做血液透析异旧？答案是：看情況意述。哪種醫(yī)療方案能夠幫助你按你想要的方式生活？我希望你在下一次面對(duì)你的醫(yī)療方案問(wèn)題時(shí)吮蛹，能夠記得這個(gè)問(wèn)題荤崇。記住，你始終可以選擇潮针。而且當(dāng)醫(yī)療方案不適合你時(shí)术荤，你可以說(shuō)不。
There’s a poem by W.S. Merwin —it’s just two sentences long —that captures how I feel now. Your absence has gone through me like thread through a needle. Everything I do is stitched with its color. For me that poem evokes my love for Paul, and a new fortitude that came from loving and losing him.
W.S. Merwin 寫(xiě)過(guò)一首詩(shī)——很短每篷，只有兩行——描述了我現(xiàn)在的感受瓣戚。“你的離去焦读，如絲線穿針子库，穿過(guò)了我。從此我的生活吨灭，都是你的色彩刚照。”對(duì)于我而言喧兄，這首詩(shī)激發(fā)了我對(duì)Paul的愛(ài)无畔，帶給我新的勇氣在我經(jīng)歷對(duì)Paul的愛(ài)和逝去之后。
When Paul said, It’s going to be OK, that didn’t mean that we could cure his illness. Instead, we learned to accept both joy and sadness at the same time; to uncover beauty and purpose both despite and because we are all bornand we all die. And for all the sadness and sleepless nights,it turns out there is joy.
當(dāng)Paul說(shuō)吠冤，“一切都會(huì)變好的浑彰，”他并不是說(shuō)他的癌癥能夠痊愈。相反拯辙，我們學(xué)會(huì)了接受這段過(guò)程中經(jīng)歷的愉悅和悲傷郭变；去發(fā)現(xiàn)生活的美和意義，學(xué)會(huì)放下涯保，因?yàn)槲覀兌紩?huì)出生诉濒，也都會(huì)死去。在那些悲傷的不眠之夜夕春，我們也找到了一些快樂(lè)未荒。
I leave flowers on Paul’s graveand watch our two-year-old run around on the grass. I build bonfires on the beachand watch the sunset with our friends. Exercise and mindfulness meditation have helped a lot. And someday, I hope I do get remarried.
我在Paul的墳?zāi)箶[上鮮花看著兩歲大的孩子在草地里奔跑玩耍。我在海灘點(diǎn)一堆篝火及志，跟朋友看日落片排。健身和冥想訓(xùn)練很有幫助寨腔。有時(shí)候，我確實(shí)希望能夠再婚率寡。
Most importantly, I get to watch our daughter grow.I’ve thought a lot about what I’m going to say to her when she’s older. Cady,engaging in the full range of experience —living and dying, love and loss —is what we get to do. Being human doesn’t happen despite suffering. It happens within it. When we approach suffering together, when we choose not to hide from it, our lives don’t diminish,they expand.
最重要的是迫卢，我能夠看著女兒一天天長(zhǎng)大。我一直在思考冶共，當(dāng)她更大一些如何跟她訴說(shuō)乾蛤。“Cady捅僵，擁抱人生所有的體驗(yàn)——生與死幻捏，愛(ài)與失去——都是我們要經(jīng)歷的。身而為人并不能夠無(wú)視苦難命咐。人生伴隨著苦難篡九。當(dāng)我們能夠一起面對(duì)苦難，當(dāng)我們選擇不再去回避它醋奠，我們的生活并不會(huì)萎縮榛臼，而是會(huì)得到延伸。”
I’ve learned that cancer isn’t always a battle. Or if it is,maybe it’s a fight for something different than we thought. Our job isn’t to fight fate, but to help each other through. Not as soldiersbut as shepherds. That’s how we make it OK, even when it’s not. By saying it out loud,by helping each other through ...and a gorilla suit never hurts, either.
經(jīng)歷過(guò)這些我意識(shí)到治療癌癥并不是一場(chǎng)戰(zhàn)役窜司。如果是的話沛善，那么可能也是一場(chǎng)跟我們想象的不同的戰(zhàn)役。我們要做的不是跟命運(yùn)抗?fàn)幦恚窍嗷シ龀纸鸬螅冗^(guò)難關(guān)。我們不是戰(zhàn)士议薪，我們是牧羊人尤蛮。這是我們體會(huì)到的變好，即使它可能不是斯议。通過(guò)開(kāi)誠(chéng)布公产捞，相互扶持度過(guò)這段旅程…準(zhǔn)備一套大猩猩戲服總沒(méi)壞處。
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