TED2013
Judy MacDonald Johnston: Prepare for a good end of life
茱蒂麥克唐納強斯頓 (Judy MacDonald Johnston): 規劃美好臨終生活
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想到死亡令人恐懼，但提前規劃是很實際的做法，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， 茱蒂麥克唐納強斯頓 (Judy MacDonald Johnston) 分享五項規劃美好臨終生活的方法。
Judy MacDonald Johnston - Entrepreneur
By day, Judy MacDonald Johnston develops children's reading programs. By night, she helps others maintain their quality of life as they near death. Full bio
By day, Judy MacDonald Johnston develops children's reading programs. By night, she helps others maintain their quality of life as they near death. Full bio
Double-click the English transcript below to play the video.
00:12
What would be a good end of life?
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什麼是美好的人生結局？
00:16
And I'm talking about the very end.
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我指的是最終結局
00:18
I'm talking about dying.
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我指的是死亡
00:21
We all think a lot about how to live well.
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我們總是思索，如何好好活著
00:25
I'd like to talk about increasing our chances of dying well.
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但我想談的
是如何增加善終的機會
是如何增加善終的機會
00:30
I'm not a geriatrician.
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我不是老年醫學專家
00:32
I design reading programs for preschoolers.
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我為學齡前兒童設計閱讀課程
00:34
What I know about this topic
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我對這個主題的瞭解
00:36
comes from a qualitative study with a sample size of two.
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來自一項只有兩個案例的研究
00:41
In the last few years, I helped two friends
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過去幾年，我幫助兩位朋友
00:43
have the end of life they wanted.
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擁有他們理想中的臨終生活
00:46
Jim and Shirley Modini spent their 68 years of marriage
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吉姆和雪莉莫迪尼夫婦 (Jim and
Shirley Modini) 結婚了 68 年
Shirley Modini) 結婚了 68 年
00:49
living off the grid on their 1,700-acre ranch
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離群索居在 1700 英畝的牧場裡
00:52
in the mountains of Sonoma County.
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位於加州索諾馬縣的山區
00:54
They kept just enough livestock to make ends meet
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他們只飼養足以維生的少數牲畜
00:58
so that the majority of their ranch would remain a refuge
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因此大部分牧場成了
01:01
for the bears and lions and so many other things
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熊、獅子和許多生物的
01:03
that lived there.
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避難所
01:05
This was their dream.
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這是他們的夢想
01:07
I met Jim and Shirley in their 80s.
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我遇見吉姆和雪莉時
他們大概是八十幾歲
他們大概是八十幾歲
01:10
They were both only children who chose not to have kids.
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兩位都是獨生子，並選擇不生孩子
01:14
As we became friends, I became their trustee
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我們成了朋友
我成了他們的信託管理人
我成了他們的信託管理人
01:16
and their medical advocate,
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和醫療代理決策人
01:18
but more importantly, I became
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但更重要的是，我成了
01:20
the person who managed their end-of-life experiences.
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安排他們臨終生活的人
01:24
And we learned a few things about how to have a good end.
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我們學到一些如何善終的經驗
01:28
In their final years, Jim and Shirley
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人生最後階段中，吉姆和雪莉
01:30
faced cancers, fractures, infections, neurological illness.
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面臨癌症、骨折、感染、神經疾病
01:34
It's true.
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真的
01:35
At the end, our bodily functions
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邁向終點時，我們的身體機能
01:37
and independence are declining to zero.
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和自主能力降低到零
01:40
What we found is that, with a plan and the right people,
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我們發現，有規劃和適當的人幫忙
01:43
quality of life can remain high.
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可維持高品質的生活
01:46
The beginning of the end is triggered
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臨終階段始於
01:48
by a mortality awareness event, and during this time,
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某項意識到死亡的事件，此時
01:51
Jim and Shirley chose ACR nature preserves
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吉姆和雪莉選擇
由 ACR 自然保育組織
由 ACR 自然保育組織
01:55
to take their ranch over when they were gone.
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在他們過世後接管牧場
01:57
This gave them the peace of mind to move forward.
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這讓他們可平靜前行
02:01
It might be a diagnosis. It might be your intuition.
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可能是診斷結果或直覺
02:05
But one day, you're going to say, "This thing is going to get me."
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有天你會說：「我過不了這關了」
02:08
Jim and Shirley spent this time
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吉姆和雪莉在這期間
02:09
letting friends know that their end was near
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讓朋友知道他們來日無多
02:11
and that they were okay with that.
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並處之泰然
02:16
Dying from cancer and dying from neurological illness
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死於癌症和死於神經疾病
02:19
are different.
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並不相同
02:21
In both cases, last days are about quiet reassurance.
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但都希望能安詳過世
02:25
Jim died first. He was conscious until the very end,
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吉姆先過世，最後一刻他依然
意識清醒
意識清醒
02:29
but on his last day he couldn't talk.
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但臨終那天，他已無法言語
02:31
Through his eyes, we knew when he needed to hear again,
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透過他的目光，我們知道他想再聽到
02:33
"It is all set, Jim. We're going to take care of Shirley
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「都安排好了，我們會好好照顧雪莉，
02:36
right here at the ranch,
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就在牧場裡，
02:37
and ACR's going to take care of your wildlife forever."
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ACR 會永遠照顧牧場裡的動物。」
02:41
From this experience I'm going to share five practices.
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由此經歷，我想分享五項做法
02:44
I've put worksheets online,
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我已將流程貼上網
02:45
so if you'd like, you can plan your own end.
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你若願意，可規劃自己的臨終生活
02:48
It starts with a plan.
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流程從制定計畫開始
02:51
Most people say, "I'd like to die at home."
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多數人說，「我希望在家中過世」
02:53
Eighty percent of Americans die in a hospital
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但 80% 美國人在醫院、
02:55
or a nursing home.
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或安養院中死亡
02:57
Saying we'd like to die at home is not a plan.
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只用嘴說要在家中過世，並不是計畫
03:01
A lot of people say, "If I get like that, just shoot me."
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有人說，「如果我變成那樣，
乾脆一槍打死我」
乾脆一槍打死我」
03:04
This is not a plan either; this is illegal.
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這也不是計畫，因為不合法
03:06
(Laughter)
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（笑聲）
03:10
A plan involves answering
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訂定計畫，需要回答
03:13
straightforward questions about the end you want.
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和臨終生活有關的直接問題
03:16
Where do you want to be when you're no longer independent?
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你無法自理生活時，要住哪裡？
03:18
What do you want in terms of medical intervention?
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你希望接受何種治療？
03:21
And who's going to make sure your plan is followed?
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誰能確保依照你的計畫執行？
03:24
You will need advocates.
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你需要代理決策人
03:25
Having more than one increases your chance
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若能有不止一位，
03:27
of getting the end you want.
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依計畫執行的機率較高
03:28
Don't assume the natural choice is your spouse or child.
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別理所當然選配偶或子女
03:31
You want someone who has the time and proximity
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你需要有時間且在附近的人
03:33
to do this job well, and you want someone
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能做好這項工作，你需要的人
03:36
who can work with people under the pressure
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能在壓力下與人合作
03:38
of an ever-changing situation.
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並應付瞬息萬變的情況
03:41
Hospital readiness is critical.
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做好就醫準備十分重要
03:42
You are likely to be headed to the emergency room,
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很可能會直送急診室
03:44
and you want to get this right.
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但你仍希望依計畫進行
03:46
Prepare a one-page summary of your medical history,
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準備一頁摘要，包括病歷、
03:49
medications and physician information.
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處方、和醫師的資訊
03:51
Put this in a really bright envelope
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將資料放在顯眼的信封裡
03:53
with copies of your insurance cards, your power of attorney,
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加上保險卡影本、授權委託書、
03:56
and your do-not-resuscitate order.
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和放棄急救同意書
03:59
Have advocates keep a set in their car.
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請代理決策人放一份在車上
04:00
Tape a set to your refrigerator.
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另一份貼在冰箱上
04:02
When you show up in the E.R. with this packet,
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帶著信封到急診室
04:04
your admission is streamlined in a material way.
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你的入院過程會順利許多
04:08
You're going to need caregivers.
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你需要看護
04:11
You'll need to assess your personality and financial situation
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依自己的個性和經濟狀況
04:14
to determine whether an elder care community
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決定要前往安養院、
04:17
or staying at home is your best choice.
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或留在家中，看哪個較適合
04:20
In either case, do not settle.
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無論何種情況，別輕易妥協
04:22
We went through a number of not-quite-right caregivers
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我們遇過一些不稱職的看護
04:26
before we found the perfect team
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直到我們找到最佳團隊—
04:28
led by Marsha,
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由瑪莎 (Marsha) 所帶領
04:31
who won't let you win at bingo just because you're dying
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她不會因你來日無多
就在賓果遊戲中放水
就在賓果遊戲中放水
04:37
but will go out and take videos of your ranch for you
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但她會前往牧場，替你拍影片
04:40
when you can't get out there,
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如果你無法離開的話
04:42
and Caitlin, who won't let you skip your morning exercises
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還有凱特琳 (Caitlin)
她不會讓你蹺掉晨間運動
她不會讓你蹺掉晨間運動
04:45
but knows when you need to hear
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但她知道你何時需要聽到
04:47
that your wife is in good hands.
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你的妻子受到妥善照顧
04:50
Finally, last words.
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最後是，臨終想聽什麼
04:53
What do you want to hear at the very end,
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生命的最後一刻
04:54
and from whom would you like to hear it?
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你想聽什麼話？由誰來說？
04:57
In my experience, you'll want to hear
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依我的經驗，你想聽的是
04:59
that whatever you're worried about is going to be fine.
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你擔心的事都已安排妥當
05:03
When you believe it's okay to let go, you will.
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如果你知道可以安心的走
你就會安心的走
你就會安心的走
05:07
So, this is a topic that normally inspires fear and denial.
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由這個常引起恐懼與抗拒的話題
05:13
What I've learned
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我學到的是
05:15
is if we put some time into planning our end of life,
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要花時間規劃臨終生活
05:18
we have the best chance of maintaining our quality of life.
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才有最大機會維持生活品質
05:21
Here are Jim and Shirley just after deciding
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這是吉姆和雪莉，就在他們決定了
05:24
who would take care of their ranch.
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牧場的託付對象之後
05:26
Here's Jim just a few weeks before he died,
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這是吉姆過世前幾星期
05:30
celebrating a birthday he didn't expect to see.
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度過一場意料之外的慶生會
05:33
And here's Shirley just a few days before she died
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這是雪莉過世前幾天
05:37
being read an article in that day's paper
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聆聽當天報紙的報導
05:39
about the significance of the wildlife refuge
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是關於莫迪尼牧場成為
05:42
at the Modini ranch.
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野生動物避難所的重要性
05:44
Jim and Shirley had a good end of life,
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吉姆和雪莉擁有美好的臨終生活
05:47
and by sharing their story with you,
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藉由分享他們的故事
05:49
I hope to increase our chances of doing the same.
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我希望能增加大家善終的機會
05:52
Thank you.
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謝謝
05:53
(Applause)
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（掌聲）
ABOUT THE SPEAKER
Judy MacDonald Johnston - EntrepreneurBy day, Judy MacDonald Johnston develops children's reading programs. By night, she helps others maintain their quality of life as they near death.
Why you should listen
Judy MacDonald Johnston is the Publisher and Cofounder of Blue Lake Children's Publishing, which develops educational reading tools for preschoolers through a program called the Tessy and Tab Reading Club. Johnston's credo, "love words early," and her focus on the earliest years of life, is an interesting foil for her other passion: Planning for end of life. Johnston's side project, Good [End of] Life, deals not with happy babies decoding symbols, but with a much more morbid topic: Death. Good [End of] Life is a set of online worksheets and practices that aim to help deal with difficult questions -- like who should speak for you if you cannot speak, and whether to fill out a do-not-resuscitate form -- before it's too late.
In the past 15 years alone Johnston has founded two other companies in addition to Blue Lake Children's Publishing: PrintPaks, a children's software company, and Kibu, a social networking site for teenage girls. Previously Johnston was a Worldwide Project Marketing Manager at Hewlett Packard.
Judy MacDonald Johnston | Speaker | TED.com