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What would be a good end of life?
什麼是美好的人生結局?
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And I'm talking about the very end.
我指的是最終結局
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I'm talking about dying.
我指的是死亡
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We all think a lot about how to live well.
我們總是思索,如何好好活著
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I'd like to talk about increasing our chances of dying well.
但我想談的是如何增加善終的機會
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I'm not a geriatrician.
我不是老年醫學專家
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I design reading programs for preschoolers.
我為學齡前兒童設計閱讀課程
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What I know about this topic
我對這個主題的瞭解
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comes from a qualitative study with a sample size of two.
來自一項只有兩個案例的研究
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In the last few years, I helped two friends
過去幾年,我幫助兩位朋友
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have the end of life they wanted.
擁有他們理想中的臨終生活
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Jim and Shirley Modini spent their 68 years of marriage
吉姆和雪莉莫迪尼夫婦 (Jim and Shirley Modini) 結婚了 68 年
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living off the grid on their 1,700-acre ranch
離群索居在 1700 英畝的牧場裡
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in the mountains of Sonoma County.
位於加州索諾馬縣的山區
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They kept just enough livestock to make ends meet
他們只飼養足以維生的少數牲畜
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so that the majority of their ranch would remain a refuge
因此大部分牧場成了
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for the bears and lions and so many other things
熊、獅子和許多生物的
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that lived there.
避難所
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This was their dream.
這是他們的夢想
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I met Jim and Shirley in their 80s.
我遇見吉姆和雪莉時他們大概是八十幾歲
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They were both only children who chose not to have kids.
兩位都是獨生子,並選擇不生孩子
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As we became friends, I became their trustee
我們成了朋友我成了他們的信託管理人
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and their medical advocate,
和醫療代理決策人
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but more importantly, I became
但更重要的是,我成了
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the person who managed their end-of-life experiences.
安排他們臨終生活的人
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And we learned a few things about how to have a good end.
我們學到一些如何善終的經驗
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In their final years, Jim and Shirley
人生最後階段中,吉姆和雪莉
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faced cancers, fractures, infections, neurological illness.
面臨癌症、骨折、感染、神經疾病
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It's true.
真的
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At the end, our bodily functions
邁向終點時,我們的身體機能
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and independence are declining to zero.
和自主能力降低到零
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What we found is that, with a plan and the right people,
我們發現,有規劃和適當的人幫忙
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quality of life can remain high.
可維持高品質的生活
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The beginning of the end is triggered
臨終階段始於
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by a mortality awareness event, and during this time,
某項意識到死亡的事件,此時
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Jim and Shirley chose ACR nature preserves
吉姆和雪莉選擇由 ACR 自然保育組織
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to take their ranch over when they were gone.
在他們過世後接管牧場
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This gave them the peace of mind to move forward.
這讓他們可平靜前行
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It might be a diagnosis. It might be your intuition.
可能是診斷結果或直覺
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But one day, you're going to say, "This thing is going to get me."
有天你會說:「我過不了這關了」
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Jim and Shirley spent this time
吉姆和雪莉在這期間
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letting friends know that their end was near
讓朋友知道他們來日無多
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and that they were okay with that.
並處之泰然
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Dying from cancer and dying from neurological illness
死於癌症和死於神經疾病
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are different.
並不相同
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In both cases, last days are about quiet reassurance.
但都希望能安詳過世
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Jim died first. He was conscious until the very end,
吉姆先過世,最後一刻他依然意識清醒
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but on his last day he couldn't talk.
但臨終那天,他已無法言語
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Through his eyes, we knew when he needed to hear again,
透過他的目光,我們知道他想再聽到
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"It is all set, Jim. We're going to take care of Shirley
「都安排好了,我們會好好照顧雪莉,
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right here at the ranch,
就在牧場裡,
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and ACR's going to take care of your wildlife forever."
ACR 會永遠照顧牧場裡的動物。」
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From this experience I'm going to share five practices.
由此經歷,我想分享五項做法
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I've put worksheets online,
我已將流程貼上網
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so if you'd like, you can plan your own end.
你若願意,可規劃自己的臨終生活
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It starts with a plan.
流程從制定計畫開始
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Most people say, "I'd like to die at home."
多數人說,「我希望在家中過世」
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Eighty percent of Americans die in a hospital
但 80% 美國人在醫院、
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or a nursing home.
或安養院中死亡
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Saying we'd like to die at home is not a plan.
只用嘴說要在家中過世,並不是計畫
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A lot of people say, "If I get like that, just shoot me."
有人說,「如果我變成那樣,乾脆一槍打死我」
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This is not a plan either; this is illegal.
這也不是計畫,因為不合法
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(Laughter)
(笑聲)
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A plan involves answering
訂定計畫,需要回答
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straightforward questions about the end you want.
和臨終生活有關的直接問題
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Where do you want to be when you're no longer independent?
你無法自理生活時,要住哪裡?
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What do you want in terms of medical intervention?
你希望接受何種治療?
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And who's going to make sure your plan is followed?
誰能確保依照你的計畫執行?
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You will need advocates.
你需要代理決策人
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Having more than one increases your chance
若能有不止一位,
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of getting the end you want.
依計畫執行的機率較高
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Don't assume the natural choice is your spouse or child.
別理所當然選配偶或子女
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You want someone who has the time and proximity
你需要有時間且在附近的人
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to do this job well, and you want someone
能做好這項工作,你需要的人
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who can work with people under the pressure
能在壓力下與人合作
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of an ever-changing situation.
並應付瞬息萬變的情況
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Hospital readiness is critical.
做好就醫準備十分重要
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You are likely to be headed to the emergency room,
很可能會直送急診室
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and you want to get this right.
但你仍希望依計畫進行
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Prepare a one-page summary of your medical history,
準備一頁摘要,包括病歷、
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medications and physician information.
處方、和醫師的資訊
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Put this in a really bright envelope
將資料放在顯眼的信封裡
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with copies of your insurance cards, your power of attorney,
加上保險卡影本、授權委託書、
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and your do-not-resuscitate order.
和放棄急救同意書
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Have advocates keep a set in their car.
請代理決策人放一份在車上
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Tape a set to your refrigerator.
另一份貼在冰箱上
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When you show up in the E.R. with this packet,
帶著信封到急診室
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your admission is streamlined in a material way.
你的入院過程會順利許多
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You're going to need caregivers.
你需要看護
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You'll need to assess your personality and financial situation
依自己的個性和經濟狀況
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to determine whether an elder care community
決定要前往安養院、
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or staying at home is your best choice.
或留在家中,看哪個較適合
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In either case, do not settle.
無論何種情況,別輕易妥協
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We went through a number of not-quite-right caregivers
我們遇過一些不稱職的看護
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before we found the perfect team
直到我們找到最佳團隊—
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led by Marsha,
由瑪莎 (Marsha) 所帶領
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who won't let you win at bingo just because you're dying
她不會因你來日無多就在賓果遊戲中放水
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but will go out and take videos of your ranch for you
但她會前往牧場,替你拍影片
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when you can't get out there,
如果你無法離開的話
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and Caitlin, who won't let you skip your morning exercises
還有凱特琳 (Caitlin)她不會讓你蹺掉晨間運動
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but knows when you need to hear
但她知道你何時需要聽到
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that your wife is in good hands.
你的妻子受到妥善照顧
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Finally, last words.
最後是,臨終想聽什麼
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What do you want to hear at the very end,
生命的最後一刻
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and from whom would you like to hear it?
你想聽什麼話?由誰來說?
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In my experience, you'll want to hear
依我的經驗,你想聽的是
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that whatever you're worried about is going to be fine.
你擔心的事都已安排妥當
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When you believe it's okay to let go, you will.
如果你知道可以安心的走你就會安心的走
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So, this is a topic that normally inspires fear and denial.
由這個常引起恐懼與抗拒的話題
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What I've learned
我學到的是
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is if we put some time into planning our end of life,
要花時間規劃臨終生活
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we have the best chance of maintaining our quality of life.
才有最大機會維持生活品質
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Here are Jim and Shirley just after deciding
這是吉姆和雪莉,就在他們決定了
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who would take care of their ranch.
牧場的託付對象之後
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Here's Jim just a few weeks before he died,
這是吉姆過世前幾星期
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celebrating a birthday he didn't expect to see.
度過一場意料之外的慶生會
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And here's Shirley just a few days before she died
這是雪莉過世前幾天
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being read an article in that day's paper
聆聽當天報紙的報導
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about the significance of the wildlife refuge
是關於莫迪尼牧場成為
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at the Modini ranch.
野生動物避難所的重要性
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Jim and Shirley had a good end of life,
吉姆和雪莉擁有美好的臨終生活
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and by sharing their story with you,
藉由分享他們的故事
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I hope to increase our chances of doing the same.
我希望能增加大家善終的機會
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Thank you.
謝謝
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(Applause)
(掌聲)