What the US health care system assumes about you | Mitchell Katz

譯者: Lilian Chiu 審譯者: SF Huang

A few years ago,

幾年前，

I was taking care of a woman who was a victim of violence.

我在照顧一名受暴婦女。

I wanted her to be seen in a clinic that specialized in trauma survivors.

我希望她能去專門醫治 受創倖存者的診所看診。

I made the appointment myself because, being the director of the department,

我親自幫她預約， 因為我是該科的主管，

I knew if I did it,

我知道如果我來預約， 她可以馬上排到時間。

she would get an appointment right away.

The clinic was about an hour and a half away from where she lived.

那間診所離她家大約 有一個半小時的路程。

But she took down the address and agreed to go.

但她記下了地址並同意去那裡。

Unfortunately, she didn't make it to the clinic.

遺憾的是，她並沒有去看診。

When I spoke to the psychiatrist, he explained to me

當我跟那名精神科醫生談論時，

他向我解釋，

that trauma survivors are often resistant

受創倖存者通常會抗拒

to dealing with the difficult issues that they face

處理他們面對的困難議題，

and often miss appointments.

且通常不會依約出現。

For this reason,

基於這個理由，

they don't generally allow the doctors to make appointments for the patients.

他們通常不會讓醫生 為他們的病人預約看診。

They had made a special exception for me.

他們是為我開了特例。

When I spoke to my patient,

當我找我的病人談時，

she had a much simpler and less Freudian explanation

她沒有依約前往的理由很簡單，

沒有那麼佛洛伊德的解釋：

of why she didn't go to that appointment:

her ride didn't show.

載她去看診的車沒有來。

Now, some of you may be thinking,

有些人可能在想：

"Didn't she have some other way of getting to that clinic appointment?"

「她沒有其他方式可以 依約去看診嗎？」

Couldn't she have taken an Uber or called another friend?

她不能叫 Uber 或打電話 找另一個朋友嗎？

If you're thinking that,

如果你這麼想，

it's probably because you have resources.

可能是因為你有資源。

But she didn't have enough money for an Uber,

但她沒有足夠的錢搭 Uber，

and she didn't have another friend to call.

她也沒有其他朋友可以幫忙。

But she did have me,

但她有我，

and I was able to get her another appointment,

我想辦法幫她再約了一次，

which she kept without difficulty.

這次她順利地準時出現。

She wasn't resistant,

她並沒有抗拒，

it's just that her ride didn't show.

只是她的車沒有來。

I wish I could say that this was an isolated incident,

我真希望我能說 這只是個獨立的事件，

but I know from running the safety net systems

但從我在舊金山、洛杉磯、

in San Francisco, Los Angeles, and now New York City,

和現今在紐約所經營的 安全網系統的經驗得知，

that health care is built on a middle-class model

醫療保健是根據中產階級的模型所建，

that often doesn't meet the needs of low-income patients.

通常無法滿足低收入病人的需求。

That's one of the reasons why it's been so difficult

那就是為什麼要縮小經濟因素

for us to close the disparity in health care

所引起的醫療保健差距，

that exists along economic lines,

這麼困難的原因之一，

despite the expansion of health insurance

雖然在「可負擔健保法案」 或俗稱歐巴馬健保之下，

under the ACA, or Obamacare.

健康保險範圍已經擴大。

Health care in the United States

美國的醫療保健

assumes that, besides getting across the large land expanse of Los Angeles,

會假設你不但能跨越

洛杉磯的廣闊土地，

it also assumes that you can take off from work

你也能在工作日請假

in the middle of the day to get care.

去看診接受醫療照護。

One of the patients who came to my East Los Angeles clinic

有位病人到我東洛杉磯診所看病，

on a Thursday afternoon

時間是星期四下午，

presented with partial blindness in both eyes.

病症為雙眼皆部分失明。

Very concerned, I said to him,

我非常擔心，對他說：

"When did this develop?"

「這是何時開始的？」

He said, "Sunday."

他說：「星期日。」

I said, "Sunday?

我說：「星期日？

Did you think of coming sooner to clinic?"

你有想過早點來看診嗎？」

And he said, "Well, I have to work in order to pay the rent."

他說：「我得工作才能付得起房租。」

A second patient to that same clinic,

同一間診所，另一位病人，

a trucker,

卡車司機，

drove three days with a raging infection,

帶著嚴重的感染開了三天的車，

only coming to see me after he had delivered his merchandise.

在他把貨送完之後才來我這裡看病。

Both patients' care was jeopardized by their delays in seeking care.

兩位病人都因為延遲就醫

而延誤了他們的最佳治療時機。

Health care in the United States assumes that you speak English

美國醫療保健的假設是你會說英文，

or can bring someone with you who can.

或有會說英文的人陪同。

In San Francisco, I took care of a patient on the inpatient service

在舊金山，我照顧的一名住院病人

who was from West Africa and spoke a dialect so unusual

來自西非，說的方言非常罕見，

that we could only find one translator on the telephonic line

我們在電話線上只能找到一名

能聽懂他語言的翻譯員。

who could understand him.

And that translator only worked one afternoon a week.

那名翻譯員的工作時間， 一週只有一個下午。

Unfortunately, my patient needed translation services every day.

不幸的是，我的病人每天都需要翻譯。

Health care in the United States assumes that you are literate.

美國的醫療保健會假設你識字。

I learned that a patient of mine who spoke English without accent

我有一位說英文完全沒有口音的病人，

was illiterate,

卻是個文盲，

when he asked me to please sign a social security disability form for him

他請我馬上幫他簽 社會安全失能表單時，

right away.

我才知道。

The form needed to go to the office that same day,

那張表格在當天就得送到辦公室去，

and I wasn't in clinic,

而我不在診所內，

so trying to help him out,

所以，為了幫他，

knowing that he was the sole caretaker of his son,

知道只有他一個人在照顧他兒子，

I said, "Well, bring the form to my administrative office.

我說：「把那張表單 帶到我的行政辦公室。

I'll sign it and I'll fax it in for you."

我簽好後會幫你傳真。」

He took the two buses to my office,

他搭了兩班公車到我的辦公室，

dropped off the form,

留下了表單，

went back home to take care of his son ...

再返家照顧他的兒子……

I got to the office, and what did I find next to the big "X" on the form?

我到了辦公室，猜猜我在表格上 大大的「X」旁邊看到什麼？

The word "applicant."

「申請人」這個詞。

He needed to sign the form.

他得在那張表單上簽名。

And so now I had to have him take the two buses back to the office

所以我得請他再搭 兩班公車到辦公室來，

and sign the form so that we could then fax it in for him.

在表單上簽名後我們才能為他傳真。

It completely changed how I took care of him.

這完全改變了我照顧他的方式。

I made sure that I always went over instructions verbally with him.

我會確保一定要口頭 跟他確認過所有的指示。

It also made me think about all of the patients

這也讓我開始思考，所有這些病人

who receive reams and reams of paper

拿到一疊又一疊的紙張，

spit out by our modern electronic health record systems,

都是我們的現代電子 病歷記錄系統印出的，

explaining their diagnoses and their treatments,

上面解釋著他們的診斷和治療，

and wondering how many people actually can understand

我很納悶有多少人能真的了解

what's on those pieces of paper.

那些紙上都寫了些什麼。

Health care in the United States assumes that you have a working telephone

美國的醫療保健 會假設你有能用的電話

and an accurate address.

以及正確的地址。

The proliferation of inexpensive cell phones

便宜手機的激增，

has actually helped quite a lot.

確實有不小的幫助。

But still, my patients run out of minutes,

但我的病人還是會有通話時數用光，

and their phones get disconnected.

手機被斷訊的情形。

Low-income people often have to move around a lot by necessity.

低收入者很常會根據需求而到處跑。

I remember reviewing a chart of a woman with an abnormality on her mammogram.

我記得看過一名 乳房 X 光片異常女子的圖表。

That chart assiduously documents that three letters were sent to her home,

那張圖表很周到地記錄著，

一共寄三封信到她家中，

asking her to please come in for follow-up.

請她來做後續追蹤。

Of course, if the address isn't accurate,

當然，如果地址並不正確，

it doesn't much matter how many letters you send to that same address.

寄再多封信去那個地址都是枉然。

Health care in the United States assumes that you have a steady supply of food.

美國的醫療保健會假設 你有穩定的食物供應。

This is particularly an issue for diabetics.

對糖尿病人來說，這個問題特別大。

We give them medications that lower their blood sugar.

我們會給糖尿病人藥物 來降低他們的血糖。

On days when they don't have enough food,

但在他們食物不足的日子，

it puts them at risk for a life-threatening side effect

他們就可能有低血糖的風險或

面臨危及生命的低血糖症副作用。

of hypoglycemia, or low blood sugar.

Health care in the United States assumes that you have a home

美國的醫療保健會假設你有個家，

with a refrigerator for your insulin,

有冰箱可以擺放你的胰島素，

a bathroom where you can wash up,

有浴室可以盥洗，

a bed where you can sleep

有床可以睡覺，

without worrying about violence while you're resting.

在休息的時候不用擔心暴力。

But what if you don't have that?

但，如果你沒有這些呢？

What if you live on the street,

如果你住在街頭，

you live under the freeway,

你住在高速公路下，

you live in a congregant shelter,

你住在聚會的庇護所中，

where every morning you have to leave at 7 or 8am?

每天早上七點或八點你就得要離開？

Where do you store your medicines?

你要把你的藥品放在哪裡？

Where do you use the bathroom?

你要到哪裡使用浴室？

How do you put your legs up if you have congestive heart failure?

如果你發生鬱血性心衰竭， 你要如何把你的腳抬高？

Is it any wonder that providing people with health insurance who are homeless

無家可歸的人有了醫療保險，

卻無法消除無家可歸的人

does not erase the huge disparity

和有家可歸的人之間的巨大差距， 這就不足為奇了。

between the homeless and the housed?

Health care in the United States assumes that you prioritize your health care.

美國的醫療保健會假設 你把你的健康照護視為優先。

But what about all of you?

但你們都是嗎？

Let me assume for a moment that you're all taking a medication.

讓我先假設各位都有吃藥。

Maybe it's for high blood pressure.

也許是高血壓的藥。

Maybe it's for diabetes or depression.

也許是糖尿病或憂鬱的藥。

What if tonight you had a choice:

如果今晚你有一個選擇：

you could have your medication but live on the street,

你可以擁有你的藥 但你得住在街頭，

or you could be housed in your home but not have your medication.

或者你可以住在家裡 但沒有你的藥。

Which would you choose?

你會選哪一個？

I know which one I would choose.

我知道我會選哪一個。

This is just a graphic example of the kinds of choices

這只是一個很寫實的例子，

說明低收入病人每天 面臨的選擇是什麼。

that low-income patients have to make every day.

So when my doctors shake their heads and say,

所以，當我的醫生搖頭說：

"I don't know why that patient didn't keep his follow-up appointments,"

「我不知道為什麼病人無法 依約前來瞭解他的後續追蹤」，

"I don't know why she didn't go for that exam that I ordered,"

「我不知道為什麼 她不去做我指定的檢測」，

I think, well, maybe her ride didn't show,

我想，也許是她的車沒來，

or maybe he had to work.

或者他得要去工作。

But also, maybe there was something more important that day

此外，也許那天有其他重要的事，

than their high blood pressure or a screening colonoscopy.

比他的高血壓 或結腸鏡檢查更重要。

Maybe that patient was dealing with an abusive spouse

也許那位病人要面對配偶的虐待，

or a daughter who is pregnant and drug-addicted

或是處理懷孕且吸毒的女兒，

or a son who was kicked out of school.

或者處理被退學的兒子。

Or even maybe they were riding their bicycle through an intersection

或者甚至他騎腳踏車過十字路口時

and got hit by a truck,

被卡車給撞了，

and now they're using a wheelchair and have very limited mobility.

現在要靠輪椅，所以行動力受限。

Obviously, these things also happen to middle-class people.

很顯然，中產階級的人 也會遇到這些事。

But when they do,

但當遇到時，

we have resources that enable us to deal with these problems.

我們有資源可以處理這些問題。

We also have the belief that we will live out our normal lifespans.

我們也相信我們會活到平均的壽命。

That's not true for low-income people.

對低收入的人卻不是如此。

They've seen their friends and relatives die young

他們見過自己的朋友、親人早逝，

of accidents,

可能是因為意外，可能是暴力，

of violence,

of cancers that should have been diagnosed at an earlier stage.

可能是本來可以 早期診斷出來的癌症。

It can lead to a sense of hopelessness,

這有可能導致絕望的感覺，

that it doesn't really matter what you do.

覺得不論怎麼做都無法改變。

I know I've painted a bleak picture of the care of low-income patients.

我知道我對低收入病人的 醫療照護做了很殘酷的描述。

But I want you to know how rewarding I find it

但我希望各位知道，我覺得

在安全網系統中工作地非常值得，

to work in a safety net system,

and my deep belief is that we can make the system responsive

我也深深相信，我們能讓這個系統

針對低收入病人的需求做出因應之道。

to the needs of low-income patients.

The starting point has to be to meet patients where they are,

首先必須設身處地為病人 提供即時與所需的協助，

provide services without obstacles

提供沒有障礙的服務，

and provide patients what they need --

提供病人他們所需要的——

not what we think they need.

而不是我們認為他們需要的。

It's impossible for me to take good care of a patient

我無法能夠將無家可歸

流落街頭的人照顧得很好。

who is homeless and living on the street.

The right prescription for a homeless patient is housing.

無家可歸的病人 需要的處方箋是有房可住。

In Los Angeles,

在洛杉磯，

we housed 4,700 chronically homeless persons

我們收容安置了四千七百名

長期無家可歸的人，

suffering from medical illness, mental illness, addiction.

他們都飽受各種病痛、 心理疾病、成癮症所苦。

When we housed them, we found that overall health care costs,

當我們提供住處給他們時， 我們發現整體的醫療保健成本，

including the housing,

包含住房的成本，是下降的。

decreased.

That's because they had many fewer hospital visits,

那是因為他們在急診和住院部分的

both in the emergency room and on the inpatient service.

就醫次數減少很多。

And we gave them back their dignity.

且我們把尊嚴還給他們。

No extra charge for that.

還不需為此額外付費。

For people who do not have a steady supply of food,

對於沒有穩定食物供應的人，

especially those who are diabetic,

特別是糖尿病患者，

safety net systems are experimenting with a variety of solutions,

安全網系統正在實驗各種解決方案，

including food pantries at primary care clinics

包括在初級醫療診所提供食品貯藏櫃，

and distributing maps of community food banks and soup kitchens.

並分發社區食物銀行 和熱湯廚房的地圖。

And in New York City,

在紐約市，

we've hired a bunch of enrollers

我們僱用了一群招募者，

to get our patients into the supplemental nutrition program

負責讓我們的病人參加補充營養計畫，

known as "food stamps" to most people.

也就是大部分人所知的「食物券」。

When patients and doctors don't understand each other,

當病人和醫生彼此互不了解，

mistakes will occur.

就會發生錯誤。

For non-English-speaking patients,

對不會說英語的病人而言，

translation is as important as a prescription pad.

翻譯和處方箋一樣重要。

Perhaps more important.

可能還更重要。

And, you know, it doesn't cost anything more

要知道，把所有的資料 都以適合四年級閱讀的程度來表達，

to put all of the materials at the level of fourth-grade reading,

並不需額外的成本，

so that everybody can understand what's being said.

這樣人人都能了解那些資訊。

But more than anything else, I think low-income patients

但，最重要的是，我認為 若有一位初級醫療醫師

benefit from having a primary care doctor.

對於低收入病人而言是很有益的。

Mind you, I think middle-class people also benefit

注意，我認為對中產階級而言，

from having somebody to quarterback their care.

若有人能管理他們的醫療照護， 他們也能從中受益。

But when they don't, they have others who can advocate for them,

但若沒有，他們還有 其他人能協助他們，

who can get them that disability placard

能幫他們取得那塊身心障礙小牌子，

or make sure the disability application is completed.

或確保失能的申請作業能完成。

But low-income people really need a team of people who can help them

但低收入的人真的需要 有一個團隊來協助他們

to access the medical and non-medical services that they need.

取得他們所需的醫療和非醫療服務。

Also, many low-income people are disenfranchised

此外，許多低收入的人被剝奪了

from other community supports,

取得其他社區支援的權利，

and they really benefit from the care and continuity provided by primary care.

他們真能受惠於持續提供給 他們的初級醫療保健照護。

A primary care doctor I particularly admire

我特別欣賞的一位初級醫療醫生

once told me how she believed that her relationship with a patient

曾告訴過我，她相信她和一位病人

超過十年的關係，

over a decade

was the only healthy relationship that that patient had in her life.

是那位病人人生中唯一的健康關係。

The good news is, you don't actually have to be a doctor

好消息是，你不一定要是醫生，

to provide that special sauce of care and continuity.

也能提供那種持續照顧的特殊醬料。

This was really brought home to me when one of my own long-term patients

當我的一位長期病人 在外面的一間醫院過世時，

died at an outside hospital.

讓我深刻地體認到這一點。

I had to tell the other doctors and nurses in my clinic

我得告訴診所內其他的醫護人員，

that he had passed.

他已經過世了。

But I didn't know that in another part of our clinic,

但我並不知道在我們診所的另一區，

on a different floor,

在另一層樓，

there was a registration clerk

有一位掛號人員

who had developed a very special relationship with my patient

和我的病人發展了非常特殊的關係，

every time he came in for an appointment.

每次他依約來看診時所發展出來的。

When she learned three weeks later that he had died,

三週後，她得知他過世時，

she came and found me in my examining room,

她來我的檢查室找我，

tears streaming down her cheeks,

眼淚流個不停，

talking about my patient and the memories that she had of him,

談到我的病人以及她對他的記憶，

the kinds of discussions that they had had about their lives together.

還有他們曾經一起討論過的人生議題。

My patient had a hard life.

我的病人過著很苦的生活。

He was by his own admission a gangbanger.

他自己承認是個幫派份子。

He had spent a substantial amount of time in prison.

他有很多時間都在監獄中度過。

He suffered from a very serious illness.

他受重病所苦。

He was a drug addict.

他是毒蟲。

But despite all that, he rarely missed a visit,

儘管如此，他看診幾乎不曾失約過，

and I like to believe that was because he knew at our clinic that he was loved.

我總相信那是因為他知道 在我們的診所中自己是被愛著的。

When our health care systems have the same commitment to low-income patients

當我們的醫療保健系統 對低收入病人的承諾，

能夠做到像那個人 對我們的承諾一樣時，

that that man had to us,

two things will happen.

會發生兩件事。

First, the system will be responsive to the needs of low-income people.

第一，系統會針對 低收入者的需求做出因應。

It will speak their language, it will meet their schedules,

它會說他們的語言， 它會配合他們的行程，

it will fulfill their needs.

它會滿足他們的需求。

Second, we will be providing the kind of care

第二，我們會提供

我們在進入這個職業時 想要做的那種醫療照護——

that we went into this profession to do --

not just checking the boxes,

不是只在紙上勾選項目而已，

but really taking care of those we serve.

而是真正照顧我們的服務對象。

Thank you.

謝謝。

(Applause)

（掌聲）