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  • A few days after my husband Paul was diagnosed with stage IV lung cancer,

    當我先生保羅被診斷出 第四期肺癌的幾天後,

  • we were lying in our bed at home,

    我們在家,躺在床上,

  • and Paul said,

    保羅跟我說:

  • "It's going to be OK."

    「一切都會沒事的。」

  • And I remember answering back,

    然後我記得我回應他:

  • "Yes.

    「沒事的。」

  • We just don't know what OK means yet."

    那時的我們並不知道 「沒事」意味著什麼。

  • Paul and I had met as first-year medical students at Yale.

    我剛認識保羅時, 我們都是耶魯醫學系新生。

  • He was smart and kind and super funny.

    當時的他聰明、善良, 而且相當風趣。

  • He used to keep a gorilla suit in the trunk of his car,

    他會把大猩猩的人偶服放在後車廂,

  • and he'd say, "It's for emergencies only."

    然後說:「這是以備不時之需。」

  • (Laughter)

    (笑聲)

  • I fell in love with Paul as I watched the care he took with his patients.

    我愛上保羅, 因為他是如此細心地照顧病人;

  • He stayed late talking with them,

    他願意花很多時間陪病人聊天,

  • seeking to understand the experience of illness

    耐心地去了解病人的感受,

  • and not just its technicalities.

    而不只是提供專業的醫療照護。

  • He later told me he fell in love with me

    後來,他說當他看到我 因心臟停止的心電圖而哭泣,

  • when he saw me cry over an EKG of a heart that had ceased beating.

    他便愛上了我。

  • We didn't know it yet,

    當時的我們並不知道,

  • but even in the heady days of young love,

    但是即便在青澀的初戀時期,

  • we were learning how to approach suffering together.

    我們便學著一起度過苦難。

  • We got married and became doctors.

    之後我們結婚,也成了醫生。

  • I was working as an internist

    當我已是一名內科醫生時,

  • and Paul was finishing his training as a neurosurgeon

    保羅正完成他的腦神經外科訓練,

  • when he started to lose weight.

    也是在那個時候, 他的體重開始下降,

  • He developed excruciating back pain and a cough that wouldn't go away.

    出現背部劇痛和長期咳嗽的症狀。

  • And when he was admitted to the hospital,

    當他被送進醫院時,

  • a CT scan revealed tumors in Paul's lungs and in his bones.

    電腦斷層掃描顯示

  • We had both cared for patients with devastating diagnoses;

    腫瘤在保羅的肺部及骨頭上。

  • now it was our turn.

    我和保羅都曾照顧病情嚴重的患者,

  • We lived with Paul's illness for 22 months.

    而現在,輪到我們來照顧自己。

  • He wrote a memoir about facing mortality.

    我們與病魔對抗了 22 個月,

  • I gave birth to our daughter Cady,

    保羅寫下面臨死亡的回憶錄。

  • and we loved her and each other.

    我生下我們的女兒凱蒂,

  • We learned directly how to struggle through really tough medical decisions.

    我們愛她也愛著彼此。

  • The day we took Paul into the hospital for the last time

    我們從這個經驗中, 學習做出每個艱難的抉擇。

  • was the most difficult day of my life.

    我們最後一次去醫院

  • When he turned to me at the end

    是我人生中最難熬的一天。

  • and said, "I'm ready,"

    當保羅最後看著我,

  • I knew that wasn't just a brave decision.

    並說:「我準備好了。」

  • It was the right one.

    我知道這不只是一個勇敢的決定,

  • Paul didn't want a ventilator and CPR.

    這更是一個正確的選擇。

  • In that moment,

    保羅並不想要使用呼吸器 和施行心肺復甦術。

  • the most important thing to Paul

    在那個當下,

  • was to hold our baby daughter.

    對保羅來說最重要的事

  • Nine hours later,

    是將我們的女兒擁入懷中。

  • Paul died.

    九個小時後,

  • I've always thought of myself as a caregiver --

    保羅逝世。

  • most physicians do --

    我總是將我自己視為照護提供者,

  • and taking care of Paul deepened what that meant.

    就像多數的醫生,

  • Watching him reshape his identity during his illness,

    而照顧保羅的經歷 加深了照護提供者的意義。

  • learning to witness and accept his pain,

    看著他尋思存在的意義,

  • talking together through his choices --

    我學習直視、接受他的病痛,

  • those experiences taught me

    並與他討論所有的決定。

  • that resilience does not mean bouncing back to where you were before,

    這所有的經歷教會了我,

  • or pretending that the hard stuff isn't hard.

    百折不饒的韌性 不代表恢復到本來的位置,

  • It is so hard.

    或佯裝所有的考驗並不難。

  • It's painful, messy stuff.

    這一切非常難熬,

  • But it's the stuff.

    充滿痛苦且凌亂,

  • And I learned that when we approach it together,

    但它是存在的。

  • we get to decide what success looks like.

    我學到,當我們一起去面對它,

  • One of the first things Paul said to me after his diagnosis was,

    我們就有權決定最好結局的模樣。

  • "I want you to get remarried."

    當保羅知道診斷結果後, 他跟我說:

  • And I was like, whoa, I guess we get to say anything out loud.

    「我要你再婚。」

  • (Laughter)

    然後我的反應是,哇! 我猜我們現在什麼都能坦白說囉。

  • It was so shocking

    (笑聲)

  • and heartbreaking ...

    這是如此讓人震驚、

  • and generous,

    心碎,

  • and really comforting

    展現慷慨無私,

  • because it was so starkly honest,

    也讓人感到非常安慰,

  • and that honesty turned out to be exactly what we needed.

    因為那是如此全然的誠實,

  • Early in Paul's illness,

    而誠實正是我們所需要的。

  • we agreed we would just keep saying things out loud.

    保羅病發早期,

  • Tasks like making a will,

    我們都同意要保持溝通順暢。

  • or completing our advance directives --

    比方寫遺囑

  • tasks that I had always avoided --

    或預立生前醫囑,

  • were not as daunting as they once seemed.

    這種我以前都會避免討論的事,

  • I realized that completing an advance directive is an act of love --

    其實並不如想像得嚇人。

  • like a wedding vow.

    我體悟到預立醫囑 其實是一種愛的表現,

  • A pact to take care of someone,

    就像結婚誓詞一樣。

  • codifying the promise

    誓約要照顧好對方,

  • that til death do us part,

    信守承諾,

  • I will be there.

    就算死亡讓我們分離,

  • If needed, I will speak for you.

    我都會在那裡。

  • I will honor your wishes.

    如果需要的話,我會替你發言。

  • That paperwork became a tangible part of our love story.

    讓你的心願得到該有的尊重。

  • As physicians,

    生前醫囑成了我們感情存在的證明。

  • Paul and I were in a good position

    身為醫生,

  • to understand and even accept his diagnosis.

    我和保羅可以了解並接受診斷結果。

  • We weren't angry about it,

    我們並不因病情而憤怒。

  • luckily,

    我們很幸運,

  • because we'd seen so many patients in devastating situations,

    因為我們都曾目睹 許多病人處在這種狀況,

  • and we knew that death is a part of life.

    我們知道死亡是生命的一部分。

  • But it's one thing to know that;

    但有件事大家要了解:

  • it was a very different experience

    面臨死亡是一種非常不同的經驗,

  • to actually live with the sadness and uncertainty of a serious illness.

    活在悲傷與對抗重病的未知中,

  • Huge strides are being made against lung cancer,

    我們積極地對抗肺癌,

  • but we knew that Paul likely had months to a few years left to live.

    但我們也知道 保羅只剩幾個月到幾年可活。

  • During that time,

    在那一段時間,

  • Paul wrote about his transition from doctor to patient.

    保羅記下了他從 醫生到病人的角色轉變。

  • He talked about feeling like he was suddenly at a crossroads,

    他說這感覺像是突然到了十字路口,

  • and how he would have thought he'd be able to see the path,

    他以為自己會知道該去的方向;

  • that because he treated so many patients,

    從以前照顧病人的經驗中,

  • maybe he could follow in their footsteps.

    他以為自己能依循前人的腳步。

  • But he was totally disoriented.

    但當時的他完全不知所措。

  • Rather than a path,

    「與其說是一條明確的道路,」

  • Paul wrote,

    保羅寫到,

  • "I saw instead

    「取而代之的,我只看到

  • only a harsh, vacant, gleaming white desert.

    荒蕪、空虛、閃著寒光的白色沙漠。

  • As if a sandstorm had erased all familiarity.

    就像被一場沙塵暴 抹去了所有熟悉的一切。

  • I had to face my mortality

    我必須正視自己的死亡,

  • and try to understand what made my life worth living,

    並試著了解我人生的意義,

  • and I needed my oncologist's help to do so."

    而我也需要腫瘤醫生的幫助。」

  • The clinicians taking care of Paul

    那些照顧保羅的醫生們

  • gave me an even deeper appreciation for my colleagues in health care.

    使我對醫院裡的同事有更深的感謝。

  • We have a tough job.

    我們有份艱難的工作。

  • We're responsible for helping patients have clarity around their prognoses

    我們有責任幫助病人釐清病情,

  • and their treatment options,

    與解釋治療方案。

  • and that's never easy, but it's especially tough

    這是非常困難的,

  • when you're dealing with potentially terminal illnesses like cancer.

    特別是面對像癌症這類 可能無法治癒的疾病。

  • Some people don't want to know how long they have left,

    有些人不想知道他們還能活多久,

  • others do.

    有些人則想知道。

  • Either way, we never have those answers.

    不論是面對哪種病人, 醫生都沒有確切的答案。

  • Sometimes we substitute hope

    有些時候,醫生會選擇給予希望,

  • by emphasizing the best-case scenario.

    對病患強調最理想的癒後狀況。

  • In a survey of physicians,

    一份針對醫生的問卷中,

  • 55 percent said they painted a rosier picture

    55% 的醫生表示在解釋癒後狀況時,

  • than their honest opinion

    與其誠實地回答,

  • when describing a patient's prognosis.

    他們會選擇給予更樂觀的回覆。

  • It's an instinct born out of kindness.

    這是出於人性善的本質。

  • But researchers have found

    但研究人員也發現,

  • that when people better understand the possible outcomes of an illness,

    當人更正確地理解疾病的預後狀況,

  • they have less anxiety,

    他們的焦慮會減輕,

  • greater ability to plan

    能更好地規劃未來,

  • and less trauma for their families.

    還有減輕對家庭所帶來的傷害。

  • Families can struggle with those conversations,

    討論病情可能會使家人間起爭執,

  • but for us, we also found that information immensely helpful with big decisions.

    但對我們來說, 有正確的資訊才能做出好的決定。

  • Most notably,

    比方,

  • whether to have a baby.

    要不要生一個孩子。

  • Months to a few years meant Paul was not likely to see her grow up.

    數月或數年意味著 保羅不太可能陪伴孩子長大。

  • But he had a good chance of being there for her birth

    但他很有機會能參與孩子的出生,

  • and for the beginning of her life.

    與陪伴她人生最初的一段時間。

  • I remember asking Paul

    我記得我問過保羅,

  • if he thought having to say goodbye to a child

    他是否覺得要跟孩子訣別,

  • would make dying even more painful.

    讓死亡這件事更加痛苦。

  • And his answer astounded me.

    然而他的回答讓我很驚訝,

  • He said,

    他說:

  • "Wouldn't it be great if it did?"

    「如果會的話不是很好嗎?」

  • And we did it.

    而我們也確實生了一個孩子。

  • Not in order to spite cancer,

    不是為了表示對癌症的不妥協,

  • but because we were learning

    相反地,是因為我們學到:

  • that living fully means accepting suffering.

    充實的生活意味著接受苦難。

  • Paul's oncologist tailored his chemo

    保羅的腫瘤醫生調整了他的化療,

  • so he could continue working as a neurosurgeon,

    所以他能繼續 以腦神經外科醫生的身分工作,

  • which initially we thought was totally impossible.

    這是我們一開始 都認為絕對不可能的。

  • When the cancer advanced

    當癌症發展至晚期,

  • and Paul shifted from surgery to writing,

    保羅將工作從外科醫生轉成了寫作,

  • his palliative care doctor prescribed a stimulant medication

    安寧療護醫生開立興奮劑藥物給他,

  • so he could be more focused.

    如此一來,他就能更專注寫作。

  • They asked Paul about his priorities and his worries.

    醫生們詢問保羅, 他最重要的事與他所擔心的事。

  • They asked him what trade-offs he was willing to make.

    他們詢問他願意做什麼樣的取捨。

  • Those conversations are the best way to ensure

    這些對話都是確保

  • that your health care matches your values.

    醫療照顧符合病患的價值觀。

  • Paul joked that it's not like that "birds and bees" talk

    保羅開玩笑說,

  • you have with your parents,

    這和跟父母討論傳宗接代不一樣;

  • where you all get it over with as quickly as possible,

    你會想快速帶過這個話題,

  • and then pretend it never happened.

    然後假裝這個話題從來沒有出現。

  • You revisit the conversation as things change.

    你得反覆思索, 答覆會依時空背景不同而異,

  • You keep saying things out loud.

    你需要一直將想法說出來。

  • I'm forever grateful

    我永遠感激保羅的醫生,

  • because Paul's clinicians felt

    因為他們相信,

  • that their job wasn't to try to give us answers they didn't have,

    他們的工作不是 試圖給予不確定的答案,

  • or only to try to fix things for us,

    或只是提供治療,

  • but to counsel Paul through painful choices ...

    而是透過艱難的決定 給予保羅諮商……

  • when his body was failing but his will to live wasn't.

    當他的身體每況愈下, 但他的求生意志並沒有改變。

  • Later, after Paul died,

    後來,保羅逝世後,

  • I received a dozen bouquets of flowers,

    我收到了好多束花,

  • but I sent just one ...

    但我就給一束……

  • to Paul's oncologist,

    給保羅的腫瘤醫生,

  • because she supported his goals

    因為她支持我先生的目標

  • and she helped him weigh his choices.

    並且幫助他權衡他的決定。

  • She knew that living means more than just staying alive.

    她知道活著 不僅僅意味著軀體的存活。

  • A few weeks ago, a patient came into my clinic.

    數週前,一位病人來我的診所。

  • A woman dealing with a serious chronic disease.

    是一位深受慢性病所苦的婦人。

  • And while we were talking about her life and her health care,

    當我們聊她的人生與醫療照護時,

  • she said, "I love my palliative care team.

    她說:「我愛我的安寧療護的團隊。

  • They taught me that it's OK to say 'no'."

    他們告訴我,說『不』是可以的。」

  • Yeah, I thought, of course it is.

    我心想:「當然是這樣啊。」

  • But many patients don't feel that.

    但很多病患並不這麼認為。

  • Compassion and Choices did a study

    幫助臨終病人的組織 「同情與選擇」在研究中

  • where they asked people about their health care preferences.

    詢問人們對醫療照護的偏好,

  • And a lot of people started their answers with the words

    很多人在回答問題前都會說:

  • "Well, if I had a choice ..."

    「這……假如我可以選的話……」

  • If I had a choice.

    假如我可以選的話。

  • And when I read that "if,"

    當我讀到「假如」,

  • I understood better

    我明白了,

  • why one in four people

    為什麼有 25% 的人

  • receives excessive or unwanted medical treatment,

    接受過多或有違自身意願的治療,

  • or watches a family member receive excessive or unwanted medical treatment.

    或目睹親人接受 過多或有違自身意願的治療。

  • It's not because doctors don't get it.

    這並不是因為醫生們不理解病情,

  • We do.

    我們的確理解,

  • We understand the real psychological consequences

    我們了解疾病對病人 與其家屬心理上的影響。

  • on patients and their families.

    但是,醫生也面臨著相同的問題。

  • The things is, we deal with them, too.

    半數的重症照護護士 與二成五的加護病房的醫生

  • Half of critical care nurses and a quarter of ICU doctors

    有過離職的念頭,

  • have considered quitting their jobs

    因為他們對於

  • because of distress over feeling that for some of their patients,

    提供不符合病人價值的照護服務 感到痛苦。

  • they've provided care that didn't fit with the person's values.

    但醫生們無法確保 他們尊重你的心願,

  • But doctors can't make sure your wishes are respected

    除非他們知道你的心願是什麼。

  • until they know what they are.

    如果可以享有更長的壽命, 你願意依賴機器過活嗎?

  • Would you want to be on life support if it offered any chance of longer life?

    還是比起生命長度, 你更在意生活品質?

  • Are you most worried about the quality of that time,

    無論哪一種都是深思熟慮 且勇敢的決定,

  • rather than quantity?

    但對每個人來說, 那都是自己的選擇。

  • Both of those choices are thoughtful and brave,

    不僅在人生的終點,我們要抉擇,

  • but for all of us, it's our choice.

    我們終其一生 都在選擇我們要的醫療照護。

  • That's true at the end of life

    假設你懷孕,你希望做基因篩檢嗎?

  • and for medical care throughout our lives.

    換膝關節手術到底是不是對的?

  • If you're pregnant, do you want genetic screening?

    你想在家還是在診所做血液透析?

  • Is a knee replacement right or not?

    答案是:

  • Do you want to do dialysis in a clinic or at home?

    這得看情況。

  • The answer is:

    哪種醫療照護 能讓你過你想要的生活?

  • it depends.

    我希望你能記住這個問題。

  • What medical care will help you live the way you want to?

    下一次當你抉擇醫療照護時,

  • I hope you remember that question

    記得你總是有選擇權,

  • the next time you face a decision in your health care.

    對於不適合你的醫療服務, 你可以說「不」。

  • Remember that you always have a choice,

    默溫(W.S. Merwin)有首詩

  • and it is OK to say no to a treatment that's not right for you.

    只有兩句話,

  • There's a poem by W.S. Merwin --

    但是真實反映了我現在的感觸。

  • it's just two sentences long --

    「你的不在已穿透了我

  • that captures how I feel now.

    像線穿過針。

  • "Your absence has gone through me

    我的行為都縫上了你的色彩。」

  • like thread through a needle.

    對我而言, 這首詩喚起了我對保羅的愛,

  • Everything I do is stitched with its color."

    和因深愛卻失去他而生的堅毅。

  • For me that poem evokes my love for Paul,

    當保羅說:「一切都會沒事。」

  • and a new fortitude

    並不表示我們能治癒他的疾病。

  • that came from loving and losing him.

    相反的,我們學習同時 接納疾病帶來的喜悅與悲傷,

  • When Paul said, "It's going to be OK,"

    發掘人生的美好與意義,

  • that didn't mean that we could cure his illness.

    縱使我們都將經歷出生與死亡。

  • Instead, we learned to accept both joy and sadness at the same time;

    所有悲傷無眠的夜晚,

  • to uncover beauty and purpose

    都化成另一種喜悅。

  • both despite and because we are all born

    我將花放在保羅的墓上,

  • and we all die.

    看著我們的兩歲女兒在草地上奔跑。