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