My mother's final wish -- and the right to die with dignity | Elaine Fong

Transcriber:

翻译人员: Frank Cui 校对人员: Helen Chang

What do you want to create?

Where do you share this with others,

and how do you want them to feel?

你想创造什么？

As a brand designer,

你在哪里把它与人分享？

I ask a lot of questions

你想让他人获得怎样的感受？

and practice empathy to understand from people

作为一名品牌设计师，

我会提出许多问题

their personalities and motivations behind the why of what they do

来与人们产生共鸣。

理解他们行为背后的性格和动机

to help them express themselves,

sometimes transforming ugly moments into unique ones,

并帮助他们表达自己的心声。

有时把丑陋的事物变得独特，

or turning something ordinary into something memorable.

有时把平凡事物变得令人难忘。

To help the face behind a brand

express themselves through beautiful experiences.

来帮助品牌后的面孔

以美妙的体验表达自己。

But what happens

when the experience you've been asked to design is death

但是当你需要设计的是死亡体验，

and the face behind that brand is your very own mother?

并且对象是你自己的母亲，

又会发生什么？

This was the design challenge I was faced with last year

when my mom was diagnosed with stage four cancer,

这是我去年所面临的的一次设计挑战，

and she asked us to support her end of life.

我的母亲被诊断出癌症晚期，

她让我们支持她结束生命的方式。

For 12 years, she was in remission from a previous cancer.

12年来，她一直处于癌症早期的缓和期。

She had a tumor behind her ear,

and this time it came back as bone cancer in one of her vertebrae.

她耳朵后面曾有个肿瘤。

现在它转移成了脊椎骨骨癌。

What we all thought was back pain from arthritis

revealed itself to be the worst.

我们都以为是关节炎引起的疼痛，

It was the beginning of the end of her life.

最终发展成了最坏的情况。

But first, let me tell you about my mom.

这是她生命结束的开端。

She was born in China in 1948.

但是首先让我为你讲述我母亲的故事。

She and her twin brother grew up in a large family.

她于1948年生于中国，

Her mother was the second wife to her father

和她的孪生兄弟在大家族中长大

and second wives and their children weren't viewed in the most positive light

我的姥姥是我姥爷的第二任妻子，

because it was just the cultural norm of the time.

第二任妻子和她的孩子 往往不会得到积极的看待。

这是时代的文化规范。

And growing up in communist China in the 1950s as a daughter and not a son

成长在20世纪50年代的中国 作为女儿而不是儿子，

meant that my mom was not the pride of the family.

And she knew she wanted better and needed to get out.

这意味着我的母亲并不是家族的骄傲。

So she got tough,

她意识到她要更好，她要逃离。

developed thick skin and decided to fight for her life.

因此她变得坚韧起来，

皮肤变得厚实， 她也决心和生活抗争。

She fled China to Hong Kong,

and when she was 22 she married my dad

她从中国大陆来到了香港，

and they made their life in the United States.

22岁时嫁给了我的父亲，

And she continued to fight.

他们在美国过起了自己的日子。

She was persistent, fearless.

她继续与生活抗争，

She never took no for an answer.

她坚韧不拔，无所畏惧，

We always said that she could charm the skin off of a snake

绝不轻言放弃。

or just whip it into a straight line.

我们常说她可以把蛇皮剥下来

(Laughter)

Growing up with our mom,

把它变成一条直线。

she fought for my sisters and I to get into the best classes in school,

（笑声）

在母亲的陪伴下长大，

even though they were full.

她为了我和我的姐姐而斗争， 只为我俩能进入学校最好的班级，

She fought for a prime real estate location for my dad

即使那个班已经满员了。

so he could start his own business.

她为了最好的的房地产位置而奋斗，

And as a teenager with me,

we fought a lot over bad boyfriends, body piercings, punk music.

因此我的父亲能开始他的事业。

在我的青少年时期，

我们因坏男朋友、身体打孔、 朋克音乐而常起冲突。

It's always true when they say mom's always right.

“母亲总是正确的” 这句话是真的。

The cancer she had in 2004 gave her a preview into her death.

2004年她得了癌症 让她预见了死亡。

At that time,

she had endured a lot of radiation and treatments.

那时，

她经受了许多辐射和治疗，

A lot of radiation involved the side of her brain,

and she never forgot

辐射干扰到了她的一侧大脑，

how the mental and physical side effects made her feel.

她从没有忘记，

心灵和生理的作用带给她的感受。

Overcoming that cancer was a source of pride for her,

as well as traveling the world with my dad,

战胜那场癌症 是她自豪感的源泉，

watching all of her daughters get married

同样自豪的是和我父亲环游世界，

and seeing her grandbabies grow up into teenagers.

看到女儿们都结婚

和看到外孙长大。

Her world was filled with beautiful experiences and a lot of color.

她的世界充满了美好的经历 以及许多色彩。

But she never talked about the shades of gray.

She never talked about how that preview into her death

但她从来没有提过 灰色的阴影。

她从未谈论过她死前的预演

gave her 12 years to silently prepare and brace herself for the end.

如何让她有 12 年的时间 来默默地为结束做准备。

This time, when we gathered around her in the hospital,

she had an announcement to make.

这次，我们在医院聚集在她身边，

She said that she did not want to do any treatments, no surgery.

她有一番话要说。

她说她不想再进行任何治疗， 也不想做手术，

She was ready to go.

She looked at us point blank and said that.

她已经准备好离开了。

She did not want to live life trapped to a bed,

她看着我们直截了当地说。

她不想过困在床上的生活，

unable to feed herself,

unable to use the bathroom for herself.

She did not want to become a vegetable.

无法自己吃饭，

无法自己使用浴室。

And she wanted to exit this world knowing exactly who she was.

她不想成为植物人。

她想在知道自己是谁的情况下， 离开人世。

She was adamant.

她很坚决。

In the state of Washington where my mom lived,

Death With Dignity has been in effect since 2009.

在我母亲生活的华盛顿州，

尊严死亡 (Death With Dignity) 自从 2009 年以来开始生效。

And for those of you who aren't familiar,

Death With Dignity is legislation

that empowers individuals to decide for themselves to move on

对于那些你不熟悉的人来说，

尊严死亡是立法

赋予个人权利，来决定他们要怎样

when science has confirmed the end is near.

在科学确认死亡将近时离开。

It gives individuals the legal right

to decide and act for themselves to move on

这给予个人合法权利

when faced with a terminal illness.

来决定，为离开世界行动，

在面临重症时。

Death With Dignity is legal in five out of 50 US states,

尊严死亡在美国50个州当中的5个州 是合法的，

and is one of many end-of-life care options available.

也是众多临终关怀选项之一。

It was this particular end-of-life care option that my mom wanted.

And she asked us to support her through this.

这也正是我母亲想得到的临终关怀。

We were devastated and none of us knew what to say.

她让我们支持她的决定，

So she spoke first.

我们大为震惊， 没人知道该说些什么。

她首先说到，

"I want a private ceremony at home, immediate family only.

This is the outfit that I want to wear and don't spend any money on flowers,

“我想在家办一个的私人仪式， 出席者只包括直系亲属 。

but if you do, I like yellow ones."

这是我离开那天要穿的服装， 别在鲜花上花任何钱。

(Laughter)

"I want my ashes scattered on Mount Rainier,

但是如果你要买的话， 我喜欢黄色的花。”

and afterwards for you all to have a dinner party,

（笑声）

“我想让我的骨灰洒在雷尼尔山，

you know, nothing fancy, casual,

然后给你们所有人开一个晚宴派对。

maybe with some Southern-style food and some music."

所有布置都很普通，随意，

或许还要来点南方风格的食物和音乐。”

She knew exactly what she wanted.

She wanted a celebration.

她清楚地知道她要什么，

After a lot of tears and listening,

她想要一个庆祝仪式。

hospice came in to consult with us on next steps.

无数次流泪、倾听过后，

临终关怀和我们商谈下一步计划，

And we learned that we needed signatures from two doctors

我们得知需要两个医生的签字

in order to proceed with Death With Dignity.

来继续进行尊严死的流程。

Her primary care physician said he would sign,

母亲的初级医护大夫说他会签，

but only if her oncologist signed off first.

Her oncologist was shocked.

但是要在母亲的癌症医师签字之后。

He was so surprised that she was ready to make such a swift decision.

癌症医师很震惊。

他惊讶于母亲这么快做出决定。

He said, "You know, like, it's stage four cancer,

but you could live for another six months, maybe even longer.

他说：“虽然这是第四期癌症，

Don't you want to have more time to live?

但是你还有六个月的时间，甚至更长。

Don't you want to enjoy life for as long as you can?"

你不想生命再长一些吗？

你不想尽可能的再多享受一下生命吗？”

My mom said she wanted Death With Dignity.

"This is my time. This is what I want."

我母亲说她想“尊严死”。

He told her no.

“这是我的时间，这是我想要的。”

医生不同意。

We were really confused.

Her cancer was confirmed,

我们都很不解。

hospice just came in and walked us through the process.

她的癌症已经确诊。

As a doctor and an educated man of science,

临终关怀也来给我们走程序。

he is trained to problem-solve diseases.

作为一名医生， 一名受过科学教育的人。

他受训过解决疾病的方法。

His expertise is to find solutions for illnesses,

not to relate to my mom's personal view on life.

他的专长是找到治疗疾病的方法，

这与我母亲的个人生命观无关。

We needed to understand where he was coming from.

我们需要知道他来自何方。

He was honest and said, "Look, I'm new to Washington.

I just transferred here from California where this law was recently made legal.

他很诚实，说：“我刚来华盛顿，

我从加利福尼亚州刚来到这， 加州最近才通过该项法律。

I have never experienced this before.

I need time to think about it.

我从没经历过，

No, I won't sign."

我需要时间考虑下。

He looked at my sisters and I to back him up.

我不会签字的。”

他看着我和我姐姐， 让我们支持他的说法。

And we looked at our mom

and she was overcome with disappointment and burst into tears.

我们看着母亲，

她克制住失望， 失声痛哭起来。

This was a woman who never took no for an answer.

And after 12 years of preparing for her end,

这个不会轻言放弃的女人。

she found herself fighting again.

准备了12年的临终计划之后，

She was fighting for her life to end, for her right to die.

她决心再次抗争。

为了她生命的终结， 为了她死亡的权利。

In hospice and palliative care,

there are three main focus areas for support.

临终关怀和姑息治疗

主要支持三个领域：

Comfort, spirituality and peace.

It's a testament to our society that this level of care is available,

舒适性、精神性、安宁性。

这证明我们社会 这种程度的照顾是可行的。

ranging from pragmatic to natural and holistic,

if you can afford it.

从现实角度 到自然和整体角度，

As a family, we decided to care for our mom at home.

如果你负担得起。

作为家人，我们决定 在家照顾我们的母亲。

And in order to create a comfortable space for her,

we needed to get creative.

为了给她一个舒适的环境。

我们需要更具创造性。

In the initial stages of her diagnosis,

在她诊断结果的初期阶段，

she was mobile with the help of a walker,

even though she was frail.

她在助步器的帮助下移动，

In order to get blood circulation flowing through her legs,

尽管她很瘦弱。

we needed to get creative with her exercises.

为了促进她腿部的血液循环，

We decided to have fun.

我们需要重新设计下她的锻炼方式。

So we would see how many Beatles songs it would take for her

我们决定让它更加有趣

to walk around the kitchen island, X amount of times,

我们想看看她在厨房绕着走 X 圈

all of us singing along to "Love Me Do" and "Let It Be."

走了多少首披头士乐队歌曲的时间，

期间我们所有人都跟着唱 《爱我吧》和《顺其自然》。

We watched YouTube videos to learn how to give her haircuts

and the house didn't have a shower on the main floor,

我们观看 YouTube 视频 学习如何给母亲理发。

so on the weekends,

由于房子一楼没有淋浴间，

we would sneak our mom into my sister's office

我们在周末的时候，

and use the handicap accessible shower.

我们就会带着母亲 溜进我姐姐的办公室，

This deluge of hot steaming water,

使用障碍人士可用的淋浴间。

my mom's body felt so amazing to her.

身体淋着大量的热水和蒸汽的

It was one of the last little luxuries that she wished for

奇妙感觉，

compared to the sponge baths that we gave her.

是母亲仅剩的几个奢侈的心愿之一，

和我们给她的海绵擦拭浴比起来。

A lot of her time was spent resting in bed

and we would watch documentaries together

她大量的时间待在床上，

and classic Warren Beatty movies.

然后我们会一起看纪录片，

Sometimes she'd ask me for a mood board of beautiful images of Mount Rainier,

还有经典的华伦 · 比蒂电影。

有时她会问我 关于雷尼尔山美丽风景的感受，

so she could look forward to where ashes would rest.

因此她可以期待一下 那片她的骨灰将要安息的地方。

Once a month she would see her oncologist for status updates,

and it was very clear from test results that her cancer was growing.

每月她会去看一次癌症医师 来跟进病情的情况。

检查结果显而易见的说明 她的癌症还在扩张。

Every time she'd plead with him

to have her Death With Dignity wish fulfilled,

and he'd say no,

每次她都会恳求医生，

and she'd go home disappointed.

让她“尊严死”的愿望实现，

医生往往回答：“不”。

At this point,

她会失望的回家。

she was in a chest brace and a wheelchair

because her bones could no longer support her.

这时候，

她带着胸部撑，坐在轮椅上，

因为她的骨头不再能支撑她。

It’s easy for us to think of design as aesthetics

我们很容易把设计视为美学

or creating visuals.

Design is also a tool for communication,

或是创造视觉效果。

a combination of creativity and empathy.

设计也是沟通交流的工具，

Earlier, I referred to my mom's death as a design challenge,

是创造力和共情心的结合。

which I know sounds strange and off-putting.

一开始，我把我母亲的死 视为一个设计上的挑战，

It's a challenge because for obvious reasons,

我知道这听起来奇怪 也令人不愉快。

but it involved design because it required us to talk about it,

由于显而易见的原因 它是一个挑战，

to talk about it with her doctors and hospice and with our families

但是这其中包含着设计， 因为这个挑战需要我们去谈论它，

to make decisions.

和母亲的医生、临终关怀、 我们的家人谈论

来做出决定。

By having the conversation,

it allowed us to come together to grasp what was happening,

通过对话，

so we could have a shared language with a common goal for understanding.

让我们一起 弄清楚发生了什么，

让我们有共同的语言、 共同理解的目标。

One night,

when I was sitting next to my mom,

I was caressing her arm,

一天晚上，

我坐在母亲旁边时，

and I noticed that the texture of her skin was unusually dry.

我抚摸着她的手臂，

And the color of her flesh was dull.

我发现他的皮肤肌理非常干燥，

I had been so focused on executing her end-of-life wishes

她的皮肤颜色也很灰暗。

我过去太专注于完成她的临终心愿了，

that I realized, I didn't know what the end of her life felt like.

我发现我并不知道 她的生命尽头是什么样。

I didn't know what she was going through because I just accepted it.

我不知道她在经历着什么， 因为我仅仅接受了这一切。

So I asked her, "What does it feel like?"

于是我问她：“那是什么感觉”

"What does what feel like?"

"Cancer.

What does your cancer feel like?"

“什么的感觉？”

“癌症，

"Fire," she said.

你的癌症是什么感觉?”

"My bones are on fire and everywhere under my skin is burning.

“火烧火燎的感觉，” 她说，

“我的骨头在灼烧， 皮肤下的每一处都在燃烧。

And every time I move, it just makes it worse.

My whole body is on fire."

每次我移动时， 就让情况变得更糟糕。

我全身都像被火烧。”

After a moment,

she said, "Are you mad at me?"

过了一会儿，

她说：“你在生我的气吗？”

"No. Why would I be mad at you?"

“没有，我为什么会生你的气？”

"For wanting to move on,

for wanting to go to heaven, because it's my time?"

“等着离开，

等着上天堂， 因为我的时候到了？”

I looked her in the eye and I said,

"I'm really proud of you.

我看着她的眼睛，说：

I think you're brave.

“我真的以你为骄傲。

I think you're a designer like me."

我认为你勇敢。

She perked up.

我认为你是像我一样的设计师。”

She was like, "Oh, really? You think I'm a designer?"

她为之一振。

"Yes.

她好像在说，“真的吗？ 你认为我是一个设计师？”

You're creating the experience that you want to have.

“没错，

You're designing how you say goodbye."

你正在创造你想拥有的体验，

She took my hand and said,

你在设计告别世界的方式。”

"You understand."

她抓住我的手，说：

“你懂我。”

The next visit to her oncologist was her last one.

What started as a small cluster in one vertebrae

在那之后是她最后一次去看癌症医师。

expanded throughout her spine

从一片微小的一节脊椎骨感染开始，

and pushed its way forward into her sternum and her rib cage.

扩散到整个脊柱，

All within four months.

再扩散到胸板和胸腔。

This time there was no begging.

只用了不到四个月。

He said, "The cancer is growing really fast."

这一次没有恳求。

医师说：“癌症扩散得确实很快。”

She looked at him in the eye and said, "I know."

母亲看着他的眼睛说：“这我知道。”

Two days later,

she got her two signatures and signed legal documents

and prescription to proceed with Death With Dignity.

两天后。

她拿到了两份签字 签署了合法文件，

The fight was over and she won.

还得到了进行“尊严死”需要的处方。

It was actually one of the happiest days of her life.

斗争以她的胜利为结束。

那是她这辈子最高兴的时光之一。

I want to be clear and say

that I don't think it was wrong of the oncologist

我想澄清一下，

to hesitate on Death With Dignity.

我不认为癌症医师犹豫“尊严死”

It was his responsibility to have a conversation with us,

是错误的。

to guide us in understanding

那是他的责任感 和我们沟通交流的责任，

and needing us to be curious about all medical treatments

为了让我们理解

that were available

和满足我们对整个治疗过程的好奇

until it was very clear her illness was terminal.

这也是没问题的；

And I completely respect him for that.

直到清楚她的病已经是晚期了。

对此我非常敬佩他。

It was also our responsibility to have a conversation with him,

同时这也是我们的责任和义务 和他进行交流与沟通。

to guide him in understanding our mom's wishes for her end of life.

为了让他明白我们的母亲的临终愿望。

He needed to be curious about that alternative as well.

也要满足他对这种选择的好奇。

When it came time to fill the prescription,

we learned there were two options.

The first was a liquid form.

我们得知处方的执行

有两个选择。

It's immediate effect varied upon body type

第一种是以液体的方式，

and could take anywhere from two hours to two days

它的即刻效果因人体差异而不同，

可能花费两小时到两天的时间

to go into effect.

We were also informed that it can burn the throat going down

才能起效。

我们也得知这会灼伤咽喉

and patients have a hard time swallowing it

because sometimes they have gag reflexes

患者会有一个痛苦的吞咽过程，

and it's hard for family members to watch.

因为有时他们会有呕吐反射，

The cost of that medicine was 400 dollars.

让家人眼睁睁地看着是很难受的。

这样的药需要花费400美元。

The second option was a pill.

It's effect much faster,

第二个选择是药片。

much easier for patients to swallow.

它起效更快。

The cost of this was 4,000 dollars.

更容易让患者咽下，

那要花费4,000美元。

Neither were covered by insurance.

两者都不在保险受理范围之内。

Our health care system policies and regulations

are intended to protect and support us.

我们的医疗保障体系的 规章制度

What patient scenarios and experiences are yet to be designed,

理应会保护和帮助我们。

病患的方案和体验尚未经过设计，

what systems need to be revisited?

Because at this moment,

there was a lot here that could use a redesign.

哪些体系需要重新回顾？

因为在这一刻，

We were so close to bringing her peace.

有太多事物可以用上新的设计。

Her dying was complicated enough.

我们马上就能给她带来平静。

How difficult does the system need to be

母亲的死已经足够复杂了，

in order to give a patient a peaceful death?

为了给患者一个平静的离开

这个体系究竟要变得 多么让人感到困难？

The price-tag difference was eye-popping for sure,

but it wasn't our decision to make, this was our mom's call.

价签的区别 无疑令人瞠目结舌。

She said,

但是这不是我们的决定。 而是母亲的。

"That's crazy. Are you kidding me?

I'll take the 400-dollar one, I'm leaving anyway."

她说，

“这太疯狂了，你在和我开玩笑吗？

(Laughter)

我要选400美元的那一个方案， 反正我就是要告别世界。”

（笑声）

The night before her death,

we had a dinner party at her house at her request.

在她去世的前一天晚上，

我们应她的要求 在她家开了一场晚宴派对。

We made a beautiful feast

of roast chicken, colorful salad,

我们布置了丰盛的宴席，

strawberry shortcake, sparkling wine.

有烤鸡、多彩的沙拉、

We made a playlist of her favorite tunes.

草莓奶油酥饼、气泡酒。

It was a mix of the Bee Gees, Dusty Springfield and Elvis.

我们制定了她最爱的音乐播放清单。

那是比吉斯、 达斯迪·斯普林菲尔德和猫王的混音。

We told stories, we laughed, she gave a toast.

She was so happy, she was glowing the whole night.

我们讲故事，我们欢笑， 她说了一段祝酒词。

她很开心， 整晚都热情洋溢。

The morning of her last day,

an end-of-life care assistant came to the house

在她生命里最后一天的早上，

to help us through the process.

临终护理的助理 来到了房子里。

As preparations were underway,

I kept stealing glances at her to see how she was doing.

来帮助我们完成该程序。

因为准备过程在地下进行，

我一直在偷看她的动向 看看她怎么样了。

Every time I saw her,

her eyes were bright

and her mouth was smiling

每次我看到她，

and she just kept giving me a thumbs up

她的眼睛很明亮，

嘴边常挂着笑容，

because she wanted us to feel brave.

一直对我竖大拇指，

因为她想让我们感到她的勇敢。

We learned there were three medications in total.

The first was to slow down her heart rate.

我们得知总共有三种药物。

第一种是减低心率，

The second was for anti-nausea

and the third was her final medication.

第二种是抗恶心，

The assistant,

第三种是她最后的药。

before he handed her the medication, said

助理

that by law, she had to declare out loud

在给她药之前说，

that it was her intention to go to sleep and to not wake up.

法律规定，她需要大声宣布

By law, none of us could help her hold the cup or help her drink it,

沉睡不醒是她的个人意愿。

she needed to do it for herself.

法律规定，我们任何人都不能帮她 拿着杯子，让她下去药物。

And he warned her that it could burn and to take her time.

她需要靠自己完成。

他提醒我母亲说 这会在灼烧感中带走她，

My mom took the cup with two hands

and pounded it back like a shot of whiskey.

母亲双手拿着杯子，

(Laughter)

一饮而尽 像喝威士忌。

She looked at my dad and smiled,

（笑声）

她笑着看向我的父亲，

closed her eyes.

And in 45 minutes she was gone.

闭上了眼睛。

45分钟后，她走了。

I know the experience that we had is not common.

For many people,

我知道我们的经历并不寻常。

they don't get the chance to say goodbye the way that we did.

对许多人来说，

他们没有机会以这种方式来告别。

For some, death is full of uncertainty

and can often be a waiting game.

对一些人来说，死亡充满了未知，

可以看做是一场等待游戏。

Watching our mom deteriorate wasn't easy

and neither was caring for her.

看着母亲的情况日益恶化并不容易，

There were many parts of the experience that were not beautiful.

照顾好她也不容易。

That involved the expected tubes, needles, bed pans

这段经历中有许多部分并不美好，

其中包括预期使用的软管、针头、便盆

and fluorescent lights.

Caring for her was possible

以及荧光灯。

because my sister Nancy took on the difficulty

我们能照料好她

of moving mom into her house,

是因为我的姐姐南希 (Nancy) 承担了

and my sister Jenny is a nurse and managed her pain until the very end.

把母亲接到她家的困难，

我妹妹珍妮是一名护士，

直到母亲去世那一刻 都在负责减缓她的痛苦。

In an odd way, there was a lot of comfort

because we were figuring out this whole mess together.

以一种奇怪的方式 我们也感到许多安慰，

因为我们在一起解决这个混乱的局面。

I can't imagine what it would have been like

if my mom lived in a state where this was not legal.

我无法想象 那将会是怎样的结局，

How long and how painful would it have been?

如果我的母亲生活在一个 “尊严死”并不合法的州。

那将会是多么漫长而又痛苦的过程？

This year, 30 US states are considering Death With Dignity.

这一年，美国30个州 都在考虑“尊严死”的问题。

And what that means for actual legislation is unknown,

but what is clear

那对于实际的法律而言 意味着什么还无从得知；

is that there are a lot more people who want to have a say.

但我们清楚的是

更多的人想有发言权。

All over the world,

there are many cultures and families

全世界

who practice their own rituals of death.

有许许多多文化和家庭

These rituals are expressions

在实践自己的死亡仪式。

这些仪式有不同的表达方式，

based on their unique situations and environments.

基于他们各自独特的环境情况。

If you could design your own death,

what would the experience be like,

如果你可以决定、设计自己的死亡，

and how would you want it to feel?

那会是怎样的经历？

你想要的又会是怎样的感觉？

I'm not a health care professional and I'm not an inventor of science.

我不是医护专家， 我也不是科学的发明家，

I'm a brand designer

that creates experiences by connecting with human emotion.

我是品牌设计师，

通过与人们的情绪相联系 来制造各种体验。

What I know from my mom's experience

is that it gave us the tools to talk about death.

从我母亲的经历中我学到

By sharing her story with friends and strangers,

它给了我们与死亡交流的工具。

借由与朋友或陌生人分享她的故事，

I've learned there is a lot of curiosity behind this.

我发现在那之后还有许多未知。

By having the conversation,

it helps us to perhaps reframe or even rebrand death

通过交流，

from feeling scary or desolate or bleak

它帮助我们重构、甚至重塑死亡，

to re-imagining it as honest, noble and brave.

从感到恐惧、孤寂、无望，

到重新思索后感到坦率、高尚、勇敢。

My mom was born a fighter

and she became a designer at the end of her life.

我的母亲生来就是个斗士，

她成为了自己的生命结束的设计者。

Today, she would have turned 69 years old

and it's her birthday wish that I share her story with you.

今天，她本应69岁了。

她的生日愿望是 把她的故事分享给你们。

Death is a universal human experience.

死亡是普遍每个人都要经历的。

What I've shared with you

is more than a conversation between myself and my family.

我所与你分享的远不只是

It's a conversation that belongs to all of us.

我和我的家人之间的交流，

而是我们所有人的对话。

Patients, doctors, healthcare providers, policy makers, family members,

病患、医生、医护、 政策制定者、家庭成员，

together we all have a say

in creating beautiful experiences from the very beginning,

我们都有发言权，

一起去创造美好的经历体验， 从头开始去做，

but more importantly, at the end.

Thank you.

但更重要的是结束。

(Applause)

谢谢。

（掌声）