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."
當我先生保羅被診斷出 第四期肺癌的幾天後, 我們在家,躺在床上, 保羅跟我說: 「一切都會沒事的。」 然後我記得我回應他: 「沒事的。」 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. 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."
我剛認識保羅時, 我們都是耶魯醫學系新生。 當時的他聰明、善良, 而且相當風趣。 他會把大猩猩的人偶服放在後車廂, 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. 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.
我愛上保羅, 因為他是如此細心地照顧病人; 他願意花很多時間陪病人聊天, 耐心地去了解病人的感受, 而不只是提供專業的醫療照護。 後來,他說當他看到我 因心臟停止的心電圖而哭泣, 他便愛上了我。 當時的我們並不知道, 但是即便在青澀的初戀時期, 我們便學著一起度過苦難。
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 tumors in Paul's lungs and in his bones. We had both cared for patients with devastating diagnoses; now it was our turn.
之後我們結婚,也成了醫生。 當我已是一名內科醫生時, 保羅正完成他的腦神經外科訓練, 也是在那個時候, 他的體重開始下降, 出現背部劇痛和長期咳嗽的症狀。 當他被送進醫院時, 電腦斷層掃描顯示 腫瘤在保羅的肺部及骨頭上。 我和保羅都曾照顧病情嚴重的患者, 而現在,輪到我們來照顧自己。
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. 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.
我們與病魔對抗了 22 個月, 保羅寫下面臨死亡的回憶錄。 我生下我們的女兒凱蒂, 我們愛她也愛著彼此。 我們從這個經驗中, 學習做出每個艱難的抉擇。 我們最後一次去醫院 是我人生中最難熬的一天。 當保羅最後看著我, 並說:「我準備好了。」 我知道這不只是一個勇敢的決定, 這更是一個正確的選擇。 保羅並不想要使用呼吸器 和施行心肺復甦術。 在那個當下, 對保羅來說最重要的事 是將我們的女兒擁入懷中。 九個小時後, 保羅逝世。
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 me that 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.
我總是將我自己視為照護提供者, 就像多數的醫生, 而照顧保羅的經歷 加深了照護提供者的意義。 看著他尋思存在的意義, 我學習直視、接受他的病痛, 並與他討論所有的決定。 這所有的經歷教會了我, 百折不饒的韌性 不代表恢復到本來的位置, 或佯裝所有的考驗並不難。 這一切非常難熬, 充滿痛苦且凌亂, 但它是存在的。 我學到,當我們一起去面對它, 我們就有權決定最好結局的模樣。
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.
當保羅知道診斷結果後, 他跟我說: 「我要你再婚。」 然後我的反應是,哇! 我猜我們現在什麼都能坦白說囉。
(Laughter)
(笑聲)
It was so shocking and heartbreaking ... and generous, and really comforting because 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. 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.
這是如此讓人震驚、 心碎, 展現慷慨無私, 也讓人感到非常安慰, 因為那是如此全然的誠實, 而誠實正是我們所需要的。 保羅病發早期, 我們都同意要保持溝通順暢。 比方寫遺囑 或預立生前醫囑, 這種我以前都會避免討論的事, 其實並不如想像得嚇人。 我體悟到預立醫囑 其實是一種愛的表現, 就像結婚誓詞一樣。 誓約要照顧好對方, 信守承諾, 就算死亡讓我們分離, 我都會在那裡。 如果需要的話,我會替你發言。 讓你的心願得到該有的尊重。 生前醫囑成了我們感情存在的證明。
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 patients in 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.
身為醫生, 我和保羅可以了解並接受診斷結果。 我們並不因病情而憤怒。 我們很幸運, 因為我們都曾目睹 許多病人處在這種狀況, 我們知道死亡是生命的一部分。 但有件事大家要了解: 面臨死亡是一種非常不同的經驗, 活在悲傷與對抗重病的未知中, 我們積極地對抗肺癌, 但我們也知道 保羅只剩幾個月到幾年可活。
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 thought he'd be able to see the path, that because he treated so many patients, maybe he could follow in their footsteps. But he was totally disoriented. Rather than a path, Paul wrote, "I saw instead only 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."
在那一段時間, 保羅記下了他從 醫生到病人的角色轉變。 他說這感覺像是突然到了十字路口, 他以為自己會知道該去的方向; 從以前照顧病人的經驗中, 他以為自己能依循前人的腳步。 但當時的他完全不知所措。 「與其說是一條明確的道路,」 保羅寫到, 「取而代之的,我只看到 荒蕪、空虛、閃著寒光的白色沙漠。 就像被一場沙塵暴 抹去了所有熟悉的一切。 我必須正視自己的死亡, 並試著了解我人生的意義, 而我也需要腫瘤醫生的幫助。」
The clinicians taking care of Paul gave 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 prognoses and their treatment options, and that's never easy, but it's especially tough when you're dealing with potentially terminal illnesses like cancer. Some people don't want to know how long they have left, others do. Either way, we never have those answers. Sometimes we substitute hope by 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. 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 plan and less trauma for their families.
那些照顧保羅的醫生們 使我對醫院裡的同事有更深的感謝。 我們有份艱難的工作。 我們有責任幫助病人釐清病情, 與解釋治療方案。 這是非常困難的, 特別是面對像癌症這類 可能無法治癒的疾病。 有些人不想知道他們還能活多久, 有些人則想知道。 不論是面對哪種病人, 醫生都沒有確切的答案。 有些時候,醫生會選擇給予希望, 對病患強調最理想的癒後狀況。 一份針對醫生的問卷中, 55% 的醫生表示在解釋癒後狀況時, 與其誠實地回答, 他們會選擇給予更樂觀的回覆。 這是出於人性善的本質。 但研究人員也發現, 當人更正確地理解疾病的預後狀況, 他們的焦慮會減輕, 能更好地規劃未來, 還有減輕對家庭所帶來的傷害。
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 birth and for the beginning of her life. I remember asking Paul if he thought having to 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 learning that living fully means accepting suffering.
討論病情可能會使家人間起爭執, 但對我們來說, 有正確的資訊才能做出好的決定。 比方, 要不要生一個孩子。 數月或數年意味著 保羅不太可能陪伴孩子長大。 但他很有機會能參與孩子的出生, 與陪伴她人生最初的一段時間。 我記得我問過保羅, 他是否覺得要跟孩子訣別, 讓死亡這件事更加痛苦。 然而他的回答讓我很驚訝, 他說: 「如果會的話不是很好嗎?」 而我們也確實生了一個孩子。 不是為了表示對癌症的不妥協, 相反地,是因為我們學到: 充實的生活意味著接受苦難。
Paul's oncologist tailored his chemo so he could continue working as a neurosurgeon, which initially we thought was totally impossible. When the cancer advanced and Paul shifted from surgery to writing, his palliative care doctor prescribed a stimulant medication so he could be more focused. They asked Paul about his priorities and his worries. They asked him what trade-offs he was willing to make. Those conversations are the best way to ensure that your health care matches your values. 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 conversation as things change. You keep saying things out loud. I'm forever grateful because Paul's clinicians felt that 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.
保羅的腫瘤醫生調整了他的化療, 所以他能繼續 以腦神經外科醫生的身分工作, 這是我們一開始 都認為絕對不可能的。 當癌症發展至晚期, 保羅將工作從外科醫生轉成了寫作, 安寧療護醫生開立興奮劑藥物給他, 如此一來,他就能更專注寫作。 醫生們詢問保羅, 他最重要的事與他所擔心的事。 他們詢問他願意做什麼樣的取捨。 這些對話都是確保 醫療照顧符合病患的價值觀。 保羅開玩笑說, 這和跟父母討論傳宗接代不一樣; 你會想快速帶過這個話題, 然後假裝這個話題從來沒有出現。 你得反覆思索, 答覆會依時空背景不同而異, 你需要一直將想法說出來。 我永遠感激保羅的醫生, 因為他們相信, 他們的工作不是 試圖給予不確定的答案, 或只是提供治療, 而是透過艱難的決定 給予保羅諮商…… 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, I received a dozen bouquets of flowers, but I sent just one ... to Paul's oncologist, because she supported his goals and she helped him weigh his choices. She knew that living means more than just staying alive.
後來,保羅逝世後, 我收到了好多束花, 但我就給一束…… 給保羅的腫瘤醫生, 因為她支持我先生的目標 並且幫助他權衡他的決定。 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. 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. And when I read that "if," I understood better why one in four people receives 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 consequences on patients and their families. The things is, we deal with them, too. Half of critical care nurses and a quarter of ICU doctors have considered quitting their jobs because 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.
數週前,一位病人來我的診所。 是一位深受慢性病所苦的婦人。 當我們聊她的人生與醫療照護時, 她說:「我愛我的安寧療護的團隊。 他們告訴我,說『不』是可以的。」 我心想:「當然是這樣啊。」 但很多病患並不這麼認為。 幫助臨終病人的組織 「同情與選擇」在研究中 詢問人們對醫療照護的偏好, 很多人在回答問題前都會說: 「這……假如我可以選的話……」 假如我可以選的話。 當我讀到「假如」, 我明白了, 為什麼有 25% 的人 接受過多或有違自身意願的治療, 或目睹親人接受 過多或有違自身意願的治療。 這並不是因為醫生們不理解病情, 我們的確理解, 我們了解疾病對病人 與其家屬心理上的影響。 但是,醫生也面臨著相同的問題。 半數的重症照護護士 與二成五的加護病房的醫生 有過離職的念頭, 因為他們對於 提供不符合病人價值的照護服務 感到痛苦。 但醫生們無法確保 他們尊重你的心願, 除非他們知道你的心願是什麼。
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 life and for medical care throughout our lives. If you're pregnant, do you want genetic screening? Is a knee replacement right or not? Do you want to do dialysis in a clinic or at home? The answer is: it depends. What medical care will help you live the way you want to? I hope you remember that question the next time you face a 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.
如果可以享有更長的壽命, 你願意依賴機器過活嗎? 還是比起生命長度, 你更在意生活品質? 無論哪一種都是深思熟慮 且勇敢的決定, 但對每個人來說, 那都是自己的選擇。 不僅在人生的終點,我們要抉擇, 我們終其一生 都在選擇我們要的醫療照護。 假設你懷孕,你希望做基因篩檢嗎? 換膝關節手術到底是不是對的? 你想在家還是在診所做血液透析? 答案是: 這得看情況。 哪種醫療照護 能讓你過你想要的生活? 我希望你能記住這個問題。 下一次當你抉擇醫療照護時, 記得你總是有選擇權, 對於不適合你的醫療服務, 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 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.
默溫(W.S. Merwin)有首詩 只有兩句話, 但是真實反映了我現在的感觸。 「你的不在已穿透了我 像線穿過針。 我的行為都縫上了你的色彩。」 對我而言, 這首詩喚起了我對保羅的愛, 和因深愛卻失去他而生的堅毅。
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 born and we all die. And for all the sadness and sleepless nights, it turns out there is joy. I leave flowers on Paul's grave and watch our two-year-old run around on the grass. I build bonfires on the beach and watch the sunset with our friends. Exercise and mindfulness meditation have helped a lot. And someday, I hope I do get remarried.
當保羅說:「一切都會沒事。」 並不表示我們能治癒他的疾病。 相反的,我們學習同時 接納疾病帶來的喜悅與悲傷, 發掘人生的美好與意義, 縱使我們都將經歷出生與死亡。 所有悲傷無眠的夜晚, 都化成另一種喜悅。 我將花放在保羅的墓上, 看著我們的兩歲女兒在草地上奔跑。 我在海灘搭起營火, 與我們的朋友一起欣賞日落。 運動與正念靜坐對我幫助很大。 有些時候, 我也會希望自己再婚。
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, 我能陪伴我們的女兒成長。 我常想當我們的女兒長大 我該如何跟她解釋。 「凱蒂, 多去體驗不同的經歷, 生與死、 愛與失去, 都是我們要經歷的。 生而為人,我們不能避免痛苦, 人生存在痛苦。 當我們一起經歷痛苦, 當我們選擇不逃避, 我們的生命不會因此消逝, 生命會延續。」
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 soldiers but 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.
我已學到罹患癌症 並不一定是場戰爭。 抑或,若它是場戰爭, 也許我們都誤解了自己為何而戰。 我們的目的不是去對抗命運, 而是扶持彼此一同度過。 我們不是軍人, 而是指引者。 如此我們才能度過困難, 即便考驗如此艱難。 透過彼此坦誠, 透過互相扶持…… 和一套大猩猩人偶服,
Thank you.
苦難都會度過的。
謝謝。
(Applause)
(掌聲)