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課程來源:TED
     

 

Judy MacDonald Johnston 談規劃美好臨終生活

Judy MacDonald Johnston: Prepare for a good end of life

 

Photo of three lions hunting on the Serengeti.

講者:Judy MacDonald Johnston

2013年2月演講,2013年5月在TED 2013上線

 

翻譯:洪曉慧

編輯:朱學恆

簡繁轉換:洪曉慧

後製:洪曉慧

字幕影片後制:謝旻均

 

影片請按此下載

MAC及手持裝置版本請按此下載

閱讀中文字幕純文字版本

 

關於這場演講

思考死亡令人恐懼,但提前規劃是實際的做法,可為臨終生活帶來更多內心的平靜。在這場肅穆且令人深思的演講中,Judy MacDonald Johnston分享五項規劃美好臨終生活的方法。

 

關於Judy MacDonald Johnston

白天,Judy MacDonald Johnston致力於發展兒童閱讀計劃。晚上,她幫助臨終者維持生活品質。

 

為什麼要聽她演講

Judy MacDonald Johnston是藍湖兒童出版社之出版商兼共同創辦者,藉由所謂的Tessy and Tab Reading Club計畫為學齡前兒童開發閱讀學習工具。Judy的信條是「趁早培養對文字的興趣」,致力於發展人生早期教育和她另一項熱衷之事-規劃臨終生活-形成有趣對比。Johnston的另一項計畫是Good [End of] Life,處理的並非天真幼兒的符號解讀問題,而是更令人恐懼的主題:死亡。Good [End of] Life是一套網上流程表和實行方法,旨在協助人們面對一些困難的問題-例如當你無法言語時,該由誰替你發言,及是否在為時已晚前填寫放棄急救同意書。

 

除了藍湖兒童出版社之外,Johnston於過去15年中創立了另外兩家公司:兒童軟體公司PrintPaks,和專為青春期少女打造的Kibu社群網站。在此之前,Johnston是Hewlett Packard公司的全球業務行銷經理。

 

「Johnston運用自己獲得的每一分利益,替他人創造上百倍的利益,從不吝惜智慧或資源,而是將其投資於最能造福大眾之處。」

-50-for-50

 

Judy MacDonald Johnston的英語網上資料

Site: Good [End of] Life

Home: Blue Lake Children's Publishing

 

[TED科技‧娛樂‧設計]

已有中譯字幕的TED影片目錄(繁體)(簡體)。請注意繁簡目錄是不一樣的。

 

Judy MacDonald Johnston 談規劃美好臨終生活

 

什麼是美好的人生結局?我指的是最終結局,我指的是死亡。

 

我們總是思索如何擁有美好生活,我想談的是如何增加善終的機會。我並非老年醫學專家,我為學齡前兒童設計閱讀課程。我對這個主題的瞭解源於一項包含兩個案例的定性研究。過去幾年,我幫助兩位朋友擁有他們理想中的臨終生活。Jim和Shirley Modini歷經68年婚姻生活,離群索居在Sonoma縣山區中1,700英畝的牧場裡。他們僅飼養足以供應生活所需的家畜,因此大部分牧場成了熊、獅子和眾多其他生物的避難所。這是他們的夢想。

 

我在Jim和Shirley八十歲左右與他們相遇。兩人都是獨生子,他們選擇不生孩子。當我們成為朋友後,我成了他們的託管人和醫療顧問,但更重要的是,我成了安排他們臨終生活的人。我們學到一些關於如何善終的事。

 

人生最後階段中,Jim和Shirley面臨癌症、骨折、感染和神經疾病的煎熬。確實如此。人生邁向終點時,我們身體的功能和自主能力將逐漸衰退。我們發現,藉由規劃和適當的協助者,將能維持高品質生活。臨終階段的起點始於某項令人意識到死亡的事件,此時Jim和Shirley選擇ACR自然保護區於他們過世後接管牧場,這讓他們擁有繼續前進的安詳心境。或許因為診斷結果,或許因為直覺,但某天你會說,「這些煎熬將擊垮我。」Jim和Shirley藉由這段時間讓朋友知道他們來日無多,他們對這種情況處之泰然。

 

死於癌症和死於神經疾病截然不同,但都希望能安詳過世。Jim先過世,直到最後一刻,他依然意識清醒。但生命中的最後一刻,他無法言語。透過他的目光,我們知道此時他需要再次聽見:「一切都已安排妥當,Jim。我們會在這座牧場裡好好照顧Shirley,ACR會永遠照顧牧場裡的動物。」

 

藉由這個經歷,我想與大家分享五項做法。我已將流程表貼上網,因此如果你有興趣,可以試著規劃自己的臨終生活。

 

這個流程以制定計畫開始。大多數人會說,「我希望於家中過世。」80 % 美國人死於醫院或安養院,希望於家中過世的想法並非所謂的計畫。許多人會說,「如果我落到那種地步,乾脆一槍打死我。」這也算不上計畫,因為不合法。(笑聲)所謂的計畫包含回答和你理想中的臨終生活有關的直接問題。當你無法自理生活時,希望住在何處?你希望接受何種治療?誰能確保你的計畫順利執行?

 

你需要協助者,擁有多個協助者將增加你獲得理想臨終生活的可能性。別將配偶或子女視為理所當然的選擇,你需要某個擁有時間且夠親近的人,使這項工作順利進行;你需要某個能與在瞬息萬變的情況下承受壓力者相處的人。

 

做好就醫準備十分重要。你或許會被送入急診室,你希望一切依計畫進行。準備一份病歷摘要、藥方和醫生資訊,將這份資料放在顯眼的信封裡,加上你的健保卡影本、委託書和放棄急救同意書,讓協助者將一份放在車上,一份貼在冰箱上。當你前往急診室時,帶著這個信封,你的就醫過程將順利許多。

 

你將需要看護。你需要評估自己的個性和經濟狀況,決定最佳選擇是前往安養院或留在家中。無論哪種情況,別輕易妥協。在我們找到由Marcia帶領的最佳團隊前,我們遇過一些不太稱職的看護。她不會因為你來日無多就讓你在賓果遊戲中獲勝(笑聲),但她會前往牧場替你拍攝影片,當你無法前往時。至於Caitlin,她不會讓你蹺掉晨間運動,但她知道你何時需要得知你的妻子受到妥善照顧。

 

最後是最終訊息。生命中的最後一刻,你想聽見什麼、想聽見誰傳達的訊息?根據我的經驗,你想聽見的是你擔心的事都安置妥當,當你認為一切妥當、不須費心時,就會放下了。

 

因此這是一個通常會引起恐懼和抗拒的話題。我學到的是,如果我們花點時間規劃臨終生活,我們將擁有極大機會維持生活品質。這是Jim和Shirley,就在他們決定將牧場託付給誰的時候。這是Jim過世前幾星期,度過一場意料之外的慶生會。這是Shirley過世前幾天,聆聽當天報紙的報導,內容是關於Modini牧場成為野生動物避難所的重要性。

 

Jim和Shirley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。

 

謝謝。

 

(掌聲)

 

以下為系統擷取之英文原文

About the Talk

Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.
 
About the Speaker
By day, Judy MacDonald Johnston develops children's reading programs. By night, she helps others maintain their quality of life as they near death.
 
About the Transcript
What would be a good end of life? And I'm talking about the very end. I'm talking about dying.
 
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.
 
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.
 
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.
 
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."
 
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.
 
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?
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
Thank you.
 
(Applause)

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