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後，我們躺在臥室裡，Paul說，一切都會變好的。我記得我回答說，是的。我們只是還不知道變好的意思。
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 suitin the trunk of his car,and he』d say, It’s for emergencies only.
我跟Paul是在耶魯醫學院讀第一年時認識的。他聰明、友善、超級有幽默感。他常年在車裡的後備箱放著一件大猩猩服，他說，「以備不時之需。」
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 illnessand not just its technicalities.He later told me he fell in love with mewhen 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.
我在目睹了他細心照顧他的患者之後便愛上了他。他跟患者可以聊到很晚，希望能夠理解疾病帶來的感觸，而不僅僅是技術層面的細節。他後來告訴我，從他看到我面對著一份停止跳動的心電圖哭泣那刻就愛上我了。我們那時不知道，早在我們尚未墜入愛河之前，我們就已經在學習如何共同承擔痛苦。
We got married and became doctors.I was working as an internistand Paul was finishing his training as a neurosurgeonwhen he started to lose weight.He developed excruciating back painand 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.
我們結婚了，畢業後都當了醫生。我選擇了當內科醫生，Paul當時即將結束神經外科的訓練課程，但他的體重也開始往下掉。他的後背逐漸開始疼痛，咳嗽總是不見好。當他被收治住院時，CT顯示腫瘤已經遍布他的肺和骨頭。我們都細心照顧過各種身患重大疾患的病人，現在輪到我們了。
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 timewas the most difficult day of my life.
我們跟Paul的癌症抗爭了22個月。他寫了一本回憶錄，記錄面對死亡的感受。我們的女兒Cady順利出生。我們愛她，愛彼此。我們學會了如何面對各種艱難的醫學選擇。Paul最後一次收治住院那天，對於我而言是最艱難的一天。
When he turned to me at the endand 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 Paulwas to hold our baby daughter.Nine hours later,Paul died.
當他在最後的時刻，看著我，說，「我準備好了。」我明白，那不僅是勇敢的選擇，也是正確的選擇。Paul並不想要呼吸機和心肺復甦，在那一刻，對於Paul而言最重要的事情是抱著我們襁褓中的女兒。九個小時之後，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.
我一直認為自己是一名照料者——就像其他醫生一樣——而照顧Paul的經歷讓我對於照料者的理解更深刻。目睹他在跟病魔鬥爭的過程中對自己的重塑，學會見證和接受他的痛苦，跟他一起接受他的選擇——這些經歷讓我學會了堅強並不意味著回到過去的自己，或假裝那些很痛苦的事情沒什麼大不了的。太艱難了。過程充滿痛苦，讓人傷透腦筋。但是就是這個過程。我知道了當我們一起努力，我們就能知道成功是什麼樣子。
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 guesswe get to say anything out loud.
當他的診斷結果出來後，他對我說的第一句話是，「我希望你能再嫁。」我當時想，哇，我覺得我們當時什麼都敢說了。
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——同時也是一種大度，同時也非常舒心，因為我們完全的誠實，這種誠實正是我們最需要的。在Paul患病的早期，我們商量好，我們什麼事情都敞開說。像是立遺囑這樣的事情，完成預留醫療指示（ADS）——（譯註：喪失主觀意識時的醫護指示）那些我一直逃避的事情——當真正面對時並沒有那麼可怕。
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 promisethat 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.
我意識到預留醫療指示（ADS）是一種愛的舉動——就像是婚禮上的誓言。一種照料對方的契約，將誓言銘刻下來直到生死相隔，我永不言棄。我會在需要時為你表達你的意願。我會完成你的願望。這個法律文書成為我們愛情故事的見證。
As physicians,Paul and I were in a good positionto understand and evenaccept 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 experienceto 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.
作為醫生，我跟Paul都有充分的心理準備去理解，甚至接受診斷結果。我們並沒有感到憤怒，很幸運，因為我們早就目睹太多危重的病人，我們知道，死，是生命的一部分。但是，大道理誰都知道；當真的自己遇到的時候，親身經歷悲傷和不確定性是完全不同的體驗。肺癌的治療方法效果很好，但是我們知道Paul的預期壽命只有幾年，甚至幾個月。
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.
在那段時間，Paul記錄了他從醫生到病人的轉變，他談到了突然感覺自己站在了十字路口，以及他是如何以為自己能看清道路，因為他已經幫助過那麼多病人，或許他可以追蹤他們的腳步。
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 mortalityand 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。根本不是一條路，Paul寫到，「我看到的是只有一片荒蕪、空虛、泛著光的白色的沙漠。就像是一場沙塵暴將所有熟悉的東西都刮跑了。我必須面對我將死的事實，嘗試搞清楚如何能夠活得有意義，我需要我的腫瘤醫生幫助我。」
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.
臨床醫生們對Paul的照料讓我對於我醫療界的同事有了更深的感激。我們的工作很難。我們有責任幫助患者清楚的知道預期後果以及他們治療的選擇，這向來不是簡單的事情，尤其是處理癌症等不治之症的時候，選擇更加的艱難。
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 picturethan their honest opinionwhen describing a patient’s prognosis.It’s an instinct born out of kindness.But researchers have foundthat when people better understand the possible outcomes of an illness,they have less anxiety,greater ability to planand less trauma for their families.
有些人願意不去知道還有多少時日，有的人想知道。無論哪種，我們都不知道答案的。有時候我們會強調最好的可能性，以期讓希望顯得更大一些。一次面向醫生的調查中，55%的醫生說當他們跟病人描述預後時，相比於他們真實的意見，他們會嘗試說得更有希望一些。這是一種出於本能的友善。但是研究人員發現當患者能夠更好的理解疾病的預期後果時，他們的焦慮更少，更有可能好好規劃，並可能減少給家庭帶來的傷痛。
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.
一個家庭在討論這類話題時可能非常痛苦，但是我們同樣發現在做重大決策時真實信息的重要性。最重要的是，要不要生孩子。只有不到一兩年的預期壽命意味著Paul無法看到女兒長大。但是他能夠有機會看到女兒的出生並在生命開始的時候陪伴左右。
I remember asking Paulif he thought havingto say goodbye to a childwould 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.
我記得問過Paul要跟一個襁褓中的孩子告別會不會讓死亡更加痛苦。他的回答震撼了我。他說，「真能這樣，難道不會更好麼？」於是我們懷孕了。並不是為了跟癌症鬥爭，而是因為我們學會了有意義的生活，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 ensurethat your health care matches your values.
Paul的腫瘤醫生適量減少了他化療的劑量這樣他依然可以從事神經外科手術，這在一開始我們覺得是完全不可能的。當癌症進一步加重時Paul放下了手術刀，拿起了筆，他的姑息療法醫生給他開了興奮類的藥物，這樣他可以更加專注。他們詢問了Paul在意的事情和擔心的事情。他們詢問了他在一些問題上的取捨。這些談話是確保你的醫療計劃符合你的預期的最好方式。
Paul joked that it’s not like that birds and bees talkyou 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.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.
Paul開玩笑說，這跟你的父母跟你談論有關性的話題是不一樣的，這種談話你總想儘早結束，然後假裝從沒發生過。當事情變化時你會回過頭來回顧這些談話。你堅持說出真實感受。我會永遠感激Paul的臨床醫生們，他們並不覺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什麼東西，而是在Paul面對痛苦的選擇時提供諮詢建議…他的身體逐漸垮下去的時候，他的精神依然矍鑠。
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死後，我收到了很多花束，而我送出了一束…給Paul的腫瘤醫生，因為她為Paul的目標提供支持並幫助他權衡可能的選擇。她知道生活並不僅僅意味著活著。
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 studywhere they asked people about their health care preferences.And a lot of people started their answers with the wordsWell, if I had a choice ...If I had a choice.
幾周前，一位患者來到我的診所。是一位患有嚴重慢性病的女士。當我們討論她的生活和醫療計劃時，她提到，「我愛我的姑息治療小組。他們讓我知道是完全可以說『不』的。」對呀，我想，當然了。但是很多患者沒有意識到這點。「熱情和選擇」組織做過調查，調查內容是詢問人們的醫療健康偏好。很多人開始回答都是以「如果我有選擇的話…」開頭。如果我有選擇。
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.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 respecteduntil they know what they are.
但我讀到那個「如果」，我更加理解為什麼四分之一的人被過度醫療了，或者目睹家庭成員被過度醫療。並不是因為醫生不知道。我們知道。我們知道這些對於患者和家庭而言帶來的真實的心理上的後果。問題是，我們也有困擾要處理。一半的重症監護護士和1/4的ICU醫生考慮過換工作，因為有時候他們提供的幫助並不符合患者的訴求，這種感覺讓他們感覺到很痛苦。但是只有當醫生知道你的願望究竟是什麼，才有可能確認它們得到了尊重。
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.
你是否願意通過生命維持裝置延續你的生命？那時你是否更加關注生活質量，而不是生命的長度？兩種選擇都是勇敢且睿智的，對我們而言，這是我們的選擇。這對於我們的臨終醫療以及我們日常的醫療服務都是如此。
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，你想做基因篩查麼？要不要更換膝關節？你希望在家還是在診所做血液透析？答案是：看情況。哪種醫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你的醫療方案問題時，能夠記得這個問題。記住，你始終可以選擇。而且當醫療方案不適合你時，你可以說不。
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 melike thread through a needle.Everything I do is stitched with its color.For me that poem evokes my love for Paul,and a new fortitudethat came from loving and losing him.
W.S. Merwin 寫過一首詩——很短，只有兩行——描述了我現在的感受。「你的離去，如絲線穿針，穿過了我。從此我的生活，都是你的色彩。」對於我而言，這首詩激發了我對Paul的愛，帶給我新的勇氣在我經歷對Paul的愛和逝去之後。
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 purposeboth 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Paul說，「一切都會變好的，」他並不是說他的癌症能夠痊癒。相反，我們學會了接受這段過程中經歷的愉悅和悲傷；去發現生活的美和意義，學會放下，因為我們都會出生，也都會死去。在那些悲傷的不眠之夜，我們也找到了一些快樂。
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的墳墓擺上鮮花看著兩歲大的孩子在草地裡奔跑玩耍。我在海灘點一堆篝火，跟朋友看日落。健身和冥想訓練很有幫助。有時候，我確實希望能夠再婚。
Most importantly,I get to watch our daughter grow.I』ve thought a lot about what I’m going to say to herwhen 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，我能夠看著女兒一天天長大。我一直在思考，當她更大一些如何跟她訴說。「Cady，擁抱人生所有的體驗——生與死，愛與失去——都是我們要經歷的。身而為人並不能夠無視苦難。人生伴隨著苦難。當我們能夠一起面對苦難，當我們選擇不再去迴避它，我們的生活並不會萎縮，而是會得到延伸。」