What we can do to die well | Timothy Ihrig

譯者: Regina Chu 審譯者: Marssi Draw

I am a palliative care physician

我是安寧照護醫師，

and I would like to talk to you today about health care.

今天我想跟大家談談健康照護。

I'd like to talk to you about the health and care

我想跟大家談

我國最脆弱的一群人 他們的健康與照護，

of the most vulnerable population in our country --

those people dealing with the most complex serious health issues.

這群人對抗著 最複雜最嚴重的健康問題。

I'd like to talk to you about economics as well.

我也想跟你們談一談經濟。

這兩者交會之處應該會把大家嚇死，

And the intersection of these two should scare the hell out of you --

it scares the hell out of me.

至少我是怕死了。

I'd also like to talk to you about palliative medicine:

我也想跟大家談談安寧療護：

a paradigm of care for this population, grounded in what they value.

這是基於這群病患的價值觀 而產生的照護模式。

Patient-centric care based on their values

以病人為中心， 根據他們的價值觀而做的照護，

that helps this population live better and longer.

幫助這個族群活得更好更久。

It's a care model that tells the truth

這個照護模式會對病人說實話，

and engages one-on-one

並與他們進行一對一對談，

並在患者所在之處碰面。

and meets people where they're at.

I'd like to start by telling the story of my very first patient.

我想以我第一個病人的故事 來做開場白。

It was my first day as a physician,

那是我當醫師的第一天，

with the long white coat ...

穿著白袍，

I stumbled into the hospital

我一走進醫院，

就碰到一位先生，海樂，68 歲，

and right away there's a gentleman, Harold, 68 years old,

came to the emergency department.

到急診室報到。

He had had headaches for about six weeks

他頭痛了六個星期，

that got worse and worse and worse and worse.

病情愈來愈重，愈來愈難過。

Evaluation revealed he had cancer that had spread to his brain.

診斷發現他有癌症， 而且已經擴散到腦部。

他的主治醫生指示我去跟海樂和家屬

The attending physician directed me to go share with Harold and his family

the diagnosis, the prognosis and options of care.

談他的診斷結果、預後及照護方案。

我的職業生涯才過了五個小時，

Five hours into my new career,

我只能做我唯一會做的事。

I did the only thing I knew how.

I walked in,

我走進去，

sat down,

坐下，

took Harold's hand,

握住海樂的手，

took his wife's hand

握住他太太的手，

然後就一直呼吸。

and just breathed.

He said, "It's not good news is it, sonny?"

他說：「不是什麼好消息， 對吧，小夥子？」

我說：「不是。」

I said, "No."

And so we talked and we listened and we shared.

然後我們開始談話、傾聽、分享。

And after a while I said,

過一陣子之後我說：

「海樂，什麼對你最有意義？

"Harold, what is it that has meaning to you?

What is it that you hold sacred?"

你最看重的東西是什麼？」

他說：

And he said,

"My family."

「我的家人。」

I said, "What do you want to do?"

我說：「那你想怎麼辦？」

He slapped me on the knee and said, "I want to go fishing."

他拍拍我的膝蓋說： 「我想去釣魚。」

I said, "That, I know how to do."

我說：「這個簡單， 我知道該怎麼做。」

Harold went fishing the next day.

海樂隔天就去釣魚了。

He died a week later.

他在一星期後去世。

As I've gone through my training in my career,

現在我已在職場受到不少訓練，

我就回想起海樂。

I think back to Harold.

And I think that this is a conversation

我在想像這樣的對話

that happens far too infrequently.

太少發生了。

And it's a conversation that had led us to crisis,

這樣的對話帶領我們到危機之處，

對今天的美式生活產生最大的威脅，

to the biggest threat to the American way of life today,

which is health care expenditures.

就是醫療支出。

So what do we know?

所以我們知道什麼？

我們知道這個族群病得最重，

We know that this population, the most ill,

吃掉了 15% 的 國內生產毛額 (GDP)，

takes up 15 percent of the gross domestic product --

nearly 2.3 trillion dollars.

將近二兆三千億美金。

So the sickest 15 percent take up 15 percent of the GDP.

所以病得最重的 15% 吃掉 15% 的 GDP。

If we extrapolate this out over the next two decades

照這樣推斷未來二十年，

with the growth of baby boomers,

隨著嬰兒潮逐漸老化，

at this rate it is 60 percent of the GDP.

這個數字會是 60% 的 GDP。

美國 GDP 的 60%──

Sixty percent of the gross domestic product

of the United States of America --

到了這個地步， 已經不再是醫療的問題了，

it has very little to do with health care at that point.

而是變成買牛奶、

It has to do with a gallon of milk,

with college tuition.

大學學費的問題。

It has to do with every thing that we value

這跟我們重視的一切

及我們目前知道的一切有關。

and every thing that we know presently.

It has at stake the free-market economy and capitalism

這會賭上美國自由市場 及資本主義的成敗。

of the United States of America.

Let's forget all the statistics for a minute, forget the numbers.

讓我們先擱下統計數字。

我們先來談一下花大錢得到什麼。

Let's talk about the value we get for all these dollars we spend.

Well, the Dartmouth Atlas, about six years ago,

達特茅斯醫療照護地圖集 在大約六年前

looked at every dollar spent by Medicare --

看了一下聯邦醫療保險 花掉的每一塊錢，

generally this population.

大多是這個族群花掉的。

We found that those patients who have the highest per capita expenditures

我們發現有最高 人均醫療費用的病人，

同時也是最受苦、 最痛、最憂鬱的病人。

had the highest suffering, pain, depression.

And, more often than not, they die sooner.

而且屢見不鮮，他們也比較快死。

How can this be?

怎麼會這樣呢？

We live in the United States,

我們活在美國，

it has the greatest health care system on the planet.

這裡有地球上最棒的醫療系統。

We spend 10 times more on these patients

我們花在這些病人身上的錢，

than the second-leading country in the world.

比第二名的國家高出十倍。

That doesn't make sense.

這沒有道理。

But what we know is,

但是我們知道的是，

全球前 50 個

out of the top 50 countries on the planet

with organized health care systems,

有醫療保健系統計畫的國家，

we rank 37th.

我們排名第 37 位。

中歐東歐等前東方集團國家 及下撒哈拉非洲國家

Former Eastern Bloc countries and sub-Saharan African countries

rank higher than us as far as quality and value.

排名都比我們還高， 品質及價值也比我們好。

Something I experience every day in my practice,

每天我看診時都會經歷一件事，

而且我敢保證， 在座很多人自己都經歷過：

and I'm sure, something many of you on your own journeys have experienced:

more is not more.

多不代表好。

Those individuals who had more tests,

做愈多檢查，

more bells, more whistles,

愈精密複雜的儀器，

more chemotherapy, more surgery, more whatever --

愈多化療，愈多手術，不管是什麼，

the more that we do to someone,

只要我們在病人身上做愈多，

it decreases the quality of their life.

就愈降低他們的生活品質。

And it shortens it, most often.

而且更常看到的是縮短壽命。

So what are we going to do about this?

所以我們要怎麼辦？

What are we doing about this?

我們要怎麼做？

And why is this so?

而且為什麼會這樣？

嚴峻的現實是，各位先生女士，

The grim reality, ladies and gentlemen,

我們，醫療業界的人 ——穿著白袍的醫師——

is that we, the health care industry -- long white-coat physicians --

are stealing from you.

從你們身上偷東西。

Stealing from you the opportunity

從你們身上偷走

to choose how you want to live your lives

選擇如何過活的機會，

in the context of whatever disease it is.

不管你得的是什麼病。

We focus on disease and pathology and surgery

我們專注在疾病、病理、手術

and pharmacology.

及藥理。

We miss the human being.

我們沒看到人。

How can we treat this

我們要怎麼治療這個

without understanding this?

卻不了解這個的存在？

我們為此做了許多；

We do things to this;

we need to do things for this.

現在我們必須為這個做點什麼。

醫療有三重目標：

The triple aim of healthcare:

one, improve patient experience.

一，改善患者經驗。

二，改善此族群的健康。

Two, improve the population health.

Three, decrease per capita expenditure across a continuum.

三，降低照護過程的人均醫療費用。

Our group, palliative care,

我們的安寧照護團隊

in 2012, working with the sickest of the sick --

在 2012 年與病得最重的患者合作，

癌症、

cancer,

心臟病、肺病、

heart disease, lung disease,

腎臟病、

renal disease,

dementia --

失智等等，

how did we improve patient experience?

我們如何改善病患經驗？

「醫生，我想待在家。」

"I want to be at home, Doc."

"OK, we'll bring the care to you."

「好，我們會去你家照護你。」

Quality of life, enhanced.

生活品質提高。

Think about the human being.

想想人。

第二點：族群健康。

Two: population health.

我們怎麼用不同的觀點看這個族群，

How did we look at this population differently,

and engage with them at a different level, a deeper level,

在不同的層面、 更深的層次與他們交流，

and connect to a broader sense of the human condition than my own?

如何將他們以人來看待， 而不是從本位來想？

我們怎麼管理這個族群，

How do we manage this group,

so that of our outpatient population,

讓我們 94% 的門診病人

94 percent, in 2012, never had to go to the hospital?

在 2012 年都不用進醫院？

Not because they couldn't.

不是因為他們不能去，

But they didn't have to.

而是他們不需要去。

我們把醫療照護帶給他們。

We brought the care to them.

We maintained their value, their quality.

我們維持他們的價值，他們的品質。

Number three: per capita expenditures.

第三：人均醫療費用。

For this population,

對這個族群而言，

現在的花費是二兆三千億美元， 二十年後是 60% 的國內生產毛額，

that today is 2.3 trillion dollars and in 20 years is 60 percent of the GDP,

we reduced health care expenditures by nearly 70 percent.

我們減低了幾乎 70% 的人均醫療費用。

They got more of what they wanted based on their values,

他們本著自己的價值觀 得到更多自己想要的，

lived better and are living longer,

可以活得更好，現在活得更久，

for two-thirds less money.

只要三分之一的花費。

While Harold's time was limited,

雖然哈樂的時間不多，

palliative care's is not.

安寧照護卻非如此。

Palliative care is a paradigm from diagnosis through the end of life.

安寧照護模式要看顧 從診斷到臨終這整段時間。

The hours,

可能是幾小時、

weeks, months, years,

幾週、幾個月、幾年、

across a continuum --

連續整段時間，

有沒有治療都是。

with treatment, without treatment.

來看克里斯汀的例子。

Meet Christine.

Stage III cervical cancer,

第三期子宮頸癌，

轉移癌，從她的子宮開始，

so, metastatic cancer that started in her cervix,

spread throughout her body.

擴散到整個身體。

She's in her 50s and she is living.

她五十幾歲，還活得很好。

This is not about end of life,

我們不是在講臨終，

this is about life.

我們是在講生命。

This is not just about the elderly,

我們不只在說老年人，

我們在說人。

this is about people.

This is Richard.

這位是理查。

End-stage lung disease.

肺病末期。

"Richard, what is it that you hold sacred?"

「理查，你最重視什麼？」

"My kids, my wife and my Harley."

「我的孩子，老婆和哈雷摩托車。」

（笑聲）

(Laughter)

「好！

"Alright!

I can't drive you around on it because I can barely pedal a bicycle,

我不能騎它載著你到處跑， 因為我連腳踏車都不會騎，

but let's see what we can do."

但是來看看能做什麼。」

Richard came to me,

理查來找我，

and he was in rough shape.

情況很糟。

He had this little voice telling him

有個小小的聲音告訴他，

that maybe his time was weeks to months.

大概只剩幾個星期或幾個月了。

And then we just talked.

我們就只是聊聊。

And I listened and tried to hear --

我聽著，也試圖去聽言外之意，

big difference.

這兩者有很大的差別。

Use these in proportion to this.

多聽少說。

I said, "Alright, let's take it one day at a time,"

我說：「好吧！過一天是一天。」

就像生命中其它章節一樣。

like we do in every other chapter of our life.

And we have met Richard where Richard's at day-to-day.

我們天天去理查住的地方。

一星期一通或兩通電話，

And it's a phone call or two a week,

以他肺病末期的狀況而言， 他過得很好。

but he's thriving in the context of end-stage lung disease.

現在，安寧照護不只照顧老年人，

Now, palliative medicine is not just for the elderly,

it is not just for the middle-aged.

也不只照顧中年人，

It is for everyone.

我們照護每一個人。

來看看我的朋友強納生。

Meet my friend Jonathan.

We have the honor and pleasure

我們很榮幸

of Jonathan and his father joining us here today.

請到強納生和他的父親來到現場。

Jonathan is in his 20s, and I met him several years ago.

強納生二十多歲，我幾年前遇到他。

He was dealing with metastatic testicular cancer,

他在與轉移性睪丸癌奮鬥，

spread to his brain.

擴散到腦部。

He had a stroke,

他有過中風，

he had brain surgery,

他曾動過腦部手術，

radiation, chemotherapy.

做過放療、化療。

Upon meeting him and his family,

在跟他及家人會診時，

he was a couple of weeks away from a bone marrow transplant,

他才做完骨髓移植幾星期。

and in listening and engaging,

他很仔細聽，

they said, "Help us understand -- what is cancer?"

他們說：「可不可以讓我們 了解一下什麼是癌症？」

How did we get this far

我們怎麼撐到這一步，

without understanding what we're dealing with?

一點都不了解我們到底在對抗什麼？

How did we get this far without empowering somebody

我們是怎麼走到這一步， 沒有教育任何人，

to know what it is they're dealing with,

讓他們了解他們到底在對抗什麼，

and then taking the next step and engaging in who they are as human beings

再帶他們走下一步， 讓他們以人類的身分參與，

to know if that is what we should do?

明白我們到底該不該那樣做？

Lord knows we can do any kind of thing to you.

天知道我們會在你們身上做什麼。

但是我們應該做嗎？

But should we?

And don't take my word for it.

你可以不信我的話。

All the evidence that is related to palliative care these days

但所有跟現今安寧照護有關的證據

都很確定患者活得更好更久。

demonstrates with absolute certainty people live better and live longer.

There was a seminal article out of the New England Journal of Medicine

2010 年，新英格蘭醫學雜誌 發表了一篇影響深遠的文章。

in 2010.

A study done at Harvard by friends of mine, colleagues.

我在哈佛的同事好友做了一個研究，

End-stage lung cancer:

在講末期肺癌：

one group with palliative care,

一組有安寧照護，

a similar group without.

另一組沒有。

The group with palliative care reported less pain,

有安寧照護那組的報告說 他們比較不痛，

less depression.

不那麼沮喪。

They needed fewer hospitalizations.

他們比較少住院。

And, ladies and gentlemen,

而且各位，

they lived three to six months longer.

他們能多活三到六個月。

If palliative care were a cancer drug,

如果安寧照護是治療癌症的藥物，

every cancer doctor on the planet would write a prescription for it.

地球上每一位癌症醫師都應該 開這種藥給病人。

Why don't they?

他們為什麼不開呢？

Again, because we goofy, long white-coat physicians

再說一次，因為我們這群 穿著白袍的傻瓜醫師

are trained and of the mantra of dealing with this,

只受過訓練處理這樣的問題，

not with this.

不是這樣的問題。

This is a space that we will all come to at some point.

我們遲早都會碰到 （經濟與健康）交會之處，

But this conversation today is not about dying,

但是今天的演講跟死亡無關，

it is about living.

而是跟怎麼活著有關。

Living based on our values,

基於我們的價值觀而活，

what we find sacred

我們視為神聖的東西，

我們想怎麼寫自己生命的章節，

and how we want to write the chapters of our lives,

whether it's the last

無論是最後一章，

or the last five.

還是最後五章。

What we know,

我們知道的，

what we have proven,

我們已證明的，

is that this conversation needs to happen today --

就是這樣的對話今天就該發生，

not next week, not next year.

不是下星期，也不是明年。

有危急的是我們今天的生活，

What is at stake is our lives today

and the lives of us as we get older

及我們老了之後的生活，

and the lives of our children and our grandchildren.

還有我們的子子孫孫的生活。

Not just in that hospital room

不僅是在醫院病房裡，

or on the couch at home,

或是家裡的沙發。

無論我們在哪裡看到什麼都一樣，

but everywhere we go and everything we see.

Palliative medicine is the answer to engage with human beings,

安寧醫護就是答案，將病患視為人，

to change the journey that we will all face,

改變我們都要面對的旅程，

and change it for the better.

而且要變得更好。

給我的同事，

To my colleagues,

to my patients,

我的病患，

to my government,

我的政府，

to all human beings,

及所有人類，

I ask that we stand and we shout and we demand

我要大家都站起來、呼喊、要求

the best care possible,

最好的照護，

so that we can live better today

讓我們今天能活得更好，

and ensure a better life tomorrow.

並確保明天的生活更好。

We need to shift today

我們今天就要改變，

so that we can live tomorrow.

明天才能享受人生。

Thank you very much.

謝謝各位！

（掌聲）

(Applause)