but first I want to introduce you to a camel.

我想向你們介紹一些我認識 當中非常聰明的孩子，

This is Cassie, a therapy camel visiting one of our young patients

但是首先請允許我 向你們介紹一隻駱駝。

in her room,

這是凱茲，它是其中一隻拜訪 我們年幼病人的治療駱駝，

which is pretty magical.

就在她的房間裡，

A friend of mine raises camels at his ranch in the Santa Cruz Mountains.

這是不是很神奇。

He has about eight of them,

在聖塔克魯茲山脈，我的一個朋友 在他的牧場裡飼養駱駝。

and he started 30 years ago

他養了八隻。

because he thought horses were too mundane.

他從三十年前開始飼養，

John is an out-of-the-box thinker,

因為他覺得馬過於平常。

which explains why the two of us have been such good friends

約翰有不同於常人的思維方式，

all of our lives.

這也解釋了為什麼我們是 關係如此好的朋友，

Over the years, I've convinced him to shuttle those sweet furry beasts

從始至終。

up to hang out with our sick kids from time to time.

這麼多年來，我已說服他 將他那些可愛的駱駝們帶出牧場，

Talking to John, I was surprised to learn

時而與我們那些 病著的孩子互動遊戲。

that camels have an average life expectancy of 40 to 50 years.

和約翰聊天時，我驚訝的了解到

The life expectancy of many of the children with whom I work

駱駝的平均壽命長達 40 至 50 年；

is less than a year.

而我照看的那麼多孩子當中， 他們的壽命很多都

This is a picture of the George Mark Children's House,

只有不到一年。

the first pediatric palliative respite care center

這是喬治·馬克兒童中心，

to open in the United States.

這是第一個

I founded it in 2004,

在美國成立的 兒童安寧及喘息照護中心。

after years of working as a psychologist

我在 2004 年成立了這個中心。

on pediatric intensive care units,

數年以來，作為一位專職於

frustrated with the undignified deaths that so many children experienced

小兒科加護病房的心理專家，

and their families had to endure.

我挫敗地見證那麼多孩子 毫無尊嚴的死亡，

As I sat with families whose children were at the end of their lives,

以及他們的家庭承受著的痛苦。

I was acutely aware of our surroundings.

當我坐在孩子的父母身旁， 陪伴他們的孩子度過最後的時光，

While the elevated train rumbled overhead on its track,

我敏銳地意識到我們周圍的 那些嘈雜聲音：

quite literally the room reverberated with each passing train car.

高架火車在鐵軌上發出的轟隆聲；

The lights on the ward were fluorescent and too bright.

每次火車經過時病房內都會有回音。

Monitors beeped, as did the elevator,

病房裡的螢光燈過於耀眼。

noisily announcing its arrival.

監視器嗶嗶響，

These families were experiencing

電梯提示到達樓層的聲音也是很吵。

some of the most excruciating moments of their lives,

這些家庭正經歷著

and I so wanted them to have a more peaceful place

他們一生中最痛苦的時刻。

in which to say a last goodbye to their young daughters and sons.

我無比希望他們 能在一個比較寧靜的地方，

Surely, I thought,

和他們還年幼的兒女做最後的告別。

there must be a better spot than a hospital intensive care unit

我想，

for children at the end of their lives.

一定會有一個比醫院的加護中心 更好的地方，

Our children's house

讓孩子們走完最後的人生。

is calm and nurturing.

我們的兒童中心，

It's a place where families can stay together

是平靜且十分關愛的。

to enjoy quality time with their children,

這是一個能讓家人相聚在一起，

many of whom are there for respite stays,

與孩子享受歡樂時光。

some with repeated visits over a span of many years.

許多病患來這裡做短暫的休養，

We call those kids our frequent flyers.

有些在數年中多次往返。

Rather than the bright, noisy quarters of the hospital,

我們笑稱那些孩子為 我們的飛行常客。

their rooms are calm and comfortable,

比起醫院裡的刺眼和嘈雜，

with actual living spaces for the families,

這裡的房間安靜又舒適，

a sanctuary of gardens

還有家庭活動空間，

and a wonderful outdoor playground

一個庇護心靈的花園，

with special structures for children with physical limitations.

以及一個很棒的戶外遊樂區，

This sweet baby Lars

附有為身體受限孩子 準備的特殊設備。

came to us directly from a hospital intensive care unit.

這個可愛的男孩拉爾斯，

Imagine hearing the heartbreaking news

從醫院加護中心直接來到我們這裡。

that none of us would ever want to hear.

想像一下被告知

His parents had been told that Lars had a brain anomaly

我們永遠都不想聽到的心碎消息。

that would keep him from ever swallowing,

他的父母被告知拉爾斯有腦部異常，

walking, talking

將會導致他永遠不能吞嚥、

or developing mentally.

走路、講話

Recognizing what little chance he had for survival,

或智力發展。

his parents chose to focus on the quality of time

在接受拉爾斯的存活機率 是多麼渺小之後，

that they could spend together.

他的父母決定善用拉爾斯

They moved into one of our family apartments

與他們能一起度過的剩餘時光。

and treasured each day that they had,

他們搬進我們家庭套房，

which were far too few.

並且珍惜每一天，

Lars's life was brief, to be sure,

但是時間實在太少了。

mere weeks,

拉爾斯的生命很短暫，準確來說，

but it was calm and comfortable.

不過幾周，

He went on hikes with his parents.

但是卻十分平靜和舒適。

The time that he spent in the pool with our aquatic therapist

他和他的父母一起去遠足。

lessened the seizures he was experiencing

與我們水療治療師在水池裡的時間，

and helped him to sleep at night.

減輕了拉爾斯的癲癇，

His family had a peaceful place

並且幫助他晚上能夠入睡。

in which to both celebrate his life

他們一家有一個寧靜的地方，

and mourn his death.

來慶祝他活著的每一天，

It has been five years since Lars was with us,

和哀悼他的離去。

and in that time,

拉爾斯已經離開我們五年了，

his family has welcomed

那五年裡，

a daughter and another son.

他的家庭又迎來了

They are such a powerful testament

一個女兒和另一個兒子。

to the positive outcome that specialized children's hospice care can create.

他們強有力的證明了，

Their baby's physical discomfort was well managed,

兒童特別的臨終看護可以帶來 多大的正面效果。

giving all of them the gift of time to be together in a beautiful place.

我們很細心照料他們孩子 身體上的不舒服，

I'm going to talk to you now

並讓他們在美好的環境裡， 享受禮物般的相處時間。

about the elephant

我現在要講的是

rather than the camel in the room.

房間裡的大象， （不願談的困境）

Very few people want to talk about death,

而不是在房間裡的駱駝。

and even fewer about children's death.

很少人願意談及死亡，

Loss of a child,

更少的人願意談及孩子的死亡。

especially for those of us who have our own children,

失去一個孩子，

is frightening,

特別是對我們有孩子的人來講，

more than frightening,

是如此可怕。

paralyzing,

更勝於可怕的是，

debilitating,

令人癱瘓，

impossible.

使人虛弱，

But what I've learned is this:

不敢想像。

children don't stop dying

但是我清楚的認識到

just because we the adults

孩子的死亡並不會

can't comprehend the injustice of losing them.

僅僅因為我們成年人，

And what's more,

不願理解失去他們的不公平而停止。

if we can be brave enough

除此以外，

to face the possibility of death,

如果我們勇敢

even among the most innocent,

面對死亡的可能性，

we gain an unparalleled kind of wisdom.

甚至那些最無辜的孩子們的死亡，

Take Crystal, for example.

我們將會從中獲得無窮的智慧。

She was one of the first children to come for care

以水晶為例，

after we opened our doors.

她是中心成立時，

She was nine when she arrived,

最早到來的孩子之一。

and her neurologist expected that she might live another two weeks.

她來時才九歲，

She had an inoperable brain tumor,

她的腦神經科醫生預測她大約 還有兩周的生命。

and her decline had really accelerated

她有一個無法手術的腦部腫瘤，

in the week before she came to us.

而且在來我們這裡前的一個禮拜裡，

After settling into her room,

她身體的衰退已經加劇。

dressed entirely in pink and lavender,

她住進房間以後，

surrounded by the Hello Kitty accessories that she loved,

她全身換上了粉色和淡紫色的衣服，

she spent the next several days

被她深愛的凱蒂貓所包圍著。

winning over the hearts of every staff member.

她在接下來的幾天中，

Bit by bit, her condition stabilized,

贏得了我們每一個工作人員的心。

and then to our astonishment,

逐漸地，她的情況穩定下來。

she actually improved.

而且令我們吃驚的是，

There were a variety of factors

她竟然有改善。

that contributed to Crystal's improvement

有很多因素

which we later came to call the "George Mark bump,"

有助於水晶的改善，

a lovely, not uncommon phenomenon

我們後來稱之為 「喬治·馬克的碰撞火花」，

where children outlive the prognoses of their illnesses

這是一個讓人欣喜， 但並非罕見的現象。

if they're outside of the hospital.

如果住在醫院之外的地方，

The calmer atmosphere of her surroundings,

孩子們比預計活得要更久。

tasty meals that were fixed often to accommodate her requests,

她周圍環境的寧靜，

the resident pets,

經常滿足她喜好的可口飯菜，

the therapy dog and rabbit spent lots of cozy time with Crystal.

中心裡的常駐寵物，

After she had been with us for about a week,

水晶與中心的狗和兔子度過的 許多舒適時光都提供了療效。

she called her grandmother,

她在我們這裡一星期後，

and she said,

她打給她的祖母，

"Gee, I'm staying in a great big house,

她說：

and there's room for you to come, too.

「哎， 我現在住在一個 很棒的房子裡，

And guess what?

而且這裡也有你可以住的地方，

You don't have to bring any quarters

你知道嗎？

because the washer and dryer are free."

你不需要帶任何硬幣，

(Laughter)

因為這裡的洗衣機和烘乾機 都是免費的。」

Crystal's grandmother soon arrived from out of town,

（笑聲）

and they spent the remaining four months of Crystal's life

水晶的祖母很快從外縣市 來到了我們這裡，

enjoying very special days together.

她陪伴著水晶走過了餘下的四個月，

Some days were special because Crystal was outside in her wheelchair

一起享受著特別的每一天。

sitting by the fountain.

有些天很特別， 因為水晶坐著輪椅來到外面，

For a little girl who had spent most of the year earlier in a hospital bed,

坐在噴泉旁。

being outside counting hummingbirds

對於一個以前一直 躺在醫院病床的小女孩來說，

made for an amazing time with her grandma,

坐在外面數著蜂鳥，

and lots of laughter.

與祖母歡聚在一起，

Other days were special because of the activities

並且開懷的大笑，這是多麼寶貴。

that our child life specialist created for her.

其他特殊的日子是因為一些

Crystal strung beads and made jewelry for everybody in the house.

我們的兒童生活專家特別為她 所準備的活動。

She painted a pumpkin to help decorate for Halloween.

水晶將珠子串起來做給 我們每個人的首飾。

She spent many excited days planning her tenth birthday,

她在南瓜上作畫並幫助我們 做萬聖節裝飾。

which of course none of us thought she would ever see.

她花了很多天很興奮的計劃著 她的十歲生日派對，

All of us wore pink boas for the occasion,

雖然我們都不認為她會活到那時。

and Crystal, as you can see,

我們所有人都戴上粉色的花圈，

queen for a day,

至於水晶，你們可以看到，

wore a sparkly tiara.

是我們那天的皇后，

One hot morning, I arrived at work

戴著一頂閃耀的皇冠。

and Crystal and her partner in crime, Charlie, greeted me.

某一個炎熱的早晨，我到了中心後，

With some help, they had set up a lemonade and cookie stand

水晶和她的同夥查理向我打招呼。

outside the front door,

在一些幫助下，他們搭起了 一個賣檸檬汁和餅乾的小攤位，

a very strategic location.

就在大門外，

I asked Crystal the price of the cookie that I had selected,

一個很明智的地方。

and she said, "Three dollars."

我問水晶我選的餅乾的價格，

(Laughter)

她說： 「三元美金。」

I said that seemed a bit high for one cookie.

（笑聲）

(Laughter)

我說這對一塊餅乾來講太貴了。

It was small.

（笑聲）

"I know," she acknowledged with a grin,

那塊餅乾很小，

"but I'm worth it."

「我知道。」她嬉笑的回答。

And therein lie the words of wisdom

「但是我值得這三元美金。」

of a young girl whose brief life forever impacted mine.

她說的話對我有很大啟發。

Crystal was worth it,

這一個年幼女孩短暫的一生 永遠影響著我。

and shouldn't every child whose life is shortened by a horrific illness

水晶的確值得。

be worth it?

難道所有被可怕疾病 縮短生命的孩子，

Together, all of us today

他們的一生不值得這些嗎？

can offer that same specialized care that Crystal received

今天，我們在座的所有人

by recognizing that children's respite and hospice care

可以提供和水晶接受到的 一樣的特殊看護，

is a critical component missing from our healthcare landscape.

只要我們承認 到兒童臨終舒緩看護治療，

It's also interesting to note

是我們的醫療體系中嚴重 缺失的一個項目。

that we are able to provide this care

更加值得注意的是，

at about one third of the cost of a hospital intensive care unit,

我們提供看護治療的費用，

and our families don't see a bill.

只相當於在醫院 加護中心的三分之一。

We are ever grateful to the supporters

而且我們的家庭收不到任何帳單，

who believe in this important work that we're doing.

我們無比感激我們的支持者，

The truth is that my colleagues and I

他們相信我們工作的重要意義。

and the parents and other family members

實際上，我和我的同事，

who get to experience this special wisdom

孩子的家長以及他們其他家庭成員，

are in a unique position.

和我一樣了解這個項目的重要性，

There are only two freestanding pediatric hospices in the United States,

但是我們為數極少。

although I'm happy to report that based on our model,

目前在美國只有兩個獨立的 兒童臨終照護中心。

there are 18 others under various stages of development.

我欣慰的要報告是， 採用我們的模式，

(Applause)

目前有 18 個中心正在 不同階段的建設中。

Still, most of the children who die in the United States every year

（掌聲）

die in hospital rooms,

但是，目前美國每年死亡的兒童，

surrounded by beeping machines

大多數在醫院裡結束了生命，

and anxious, exhausted adults

被嗶嗶聲的機器

who have no other option

和焦急、精疲力盡的家長包圍著。

but to say goodbye under those harsh, institutional lights

他們沒有選擇，

and among virtual strangers.

只能在刺目的醫院燈光 和陌生人的注視下，

For comparison's sake,

與自己的寶貝說再見。

the United Kingdom,

相比來講，

which is a country with about one fifth the population of the United States,

英國

and about half the size of the state of California,

僅有著五分之一的美國人口，

has 54 hospice and respite centers.

國家也只有半個加州大小，

Why is that?

卻有 54 所臨終看護和喘息休養中心。

I've asked myself that question obviously many times.

為什麼呢？

My best guess is that Americans, with our positive can-do attitude

我常常問自己，

hold the expectation that our medical care system will fix it,

我的猜測是我們積極樂觀美國人，

even though it may be a childhood illness for which there is no cure.

對目前醫療體系有著 它會逐漸完善這個缺失的期許，

We go to extraordinary measures to keep children alive

即便它是一個無法治愈的幼兒疾病，

when in fact the greatest kindness that we might give them

我們採取幾乎任何措施來 延長孩子的生命，

would be a peaceful, pain-free

但是事實上我們能給他們 最好的禮物，

end of life.

莫過於平靜、沒有痛苦的

The transition from cure to care

生命末期。

remains a challenging one for many hospital physicians

從治愈轉變為照護的過程，

whose training has really been about saving lives,

對許多醫院的醫生來說 還是一種挑戰。

not about gently guiding the patient to the end of life.

醫生認為他們的職責是救人，

The dad of a sweet baby for whom we cared at the end of her life

並不是溫和的引導 他們的病人走向生命結束。

certainly captured this dichotomy

一個我們看護的可愛寶寶的父親

when he reflected

確實領會了這個矛盾。

that there are a lot of people to help you bring an infant into the world

他反映說，

but very few to help you usher a baby out.

有很多人幫助你將你的寶貝 帶到這個世界來，

So what is the magic ingredient at George Mark?

卻很少有人願意幫助你帶他們離去。

The complex medical diagnoses that bring our young patients to us

所以在喬治·馬克有什麼 神奇的成分呢？

mean that their lives have often been restricted,

伴隨著病人來到我們中心的 那些複雜的診斷，

some to a hospital bed for long periods of time,

意味著他們的生命會被侷限，

others to wheelchairs,

有一些在醫院病床上躺 很長一段時間，

still others to intensive courses of chemotherapy or rehab.

另外一些在輪椅上，

We make a practice of ignoring those limitations.

還有一些需要密集化療和復健。

Our default answer is "yes"

我們基本上忽略這些限制。

and our default question is, "Why not?"

我們的默認答案是「可以」，

That's why we took a young boy

我們的默認問題是 「為什麼不可以？」

who wasn't going to live for another baseball season

這就是為什麼我們 看護的一個年幼的男孩，

to Game 5 of the World Series.

他的生命被預期不會活過 下一個棒球賽季，

That's why we have a talent show put on by the staff and kids

活到世界杯的第五場 （註：大約 10 月底）。

for family and friends.

這也是為什麼孩子們和員工 舉辦了才藝秀，

Who wouldn't be enchanted by a young boy playing a piano piece with his feet,

讓他們的家庭和朋友來觀看。

because his arms are atrophied?

誰不會被一個用腳 彈奏鋼琴的小男孩而動容，

That's why we have a prom every year.

只因為他的手臂萎縮了？

It's pretty magical.

這就是為什麼我們每年 都有畢業舞會，

We started the prom