What do you want to create? Where do you share this with others, and how do you want them to feel? As a brand designer, I ask a lot of questions and practice empathy to understand from people their personalities and motivations behind the why of what they do to help them express themselves, sometimes transforming ugly moments into unique ones, or turning something ordinary into something memorable. To help the face behind a brand express themselves through beautiful experiences. But what happens when the experience you've been asked to design is death and the face behind that brand is your very own mother?
你想創造什麼? 你在哪與他人分享? 你希望帶給他們什麼感受? 作為品牌設計師, 我提出許多問題 並實踐同理心, 以了解人們的個性 和行為背後的動機, 協助他們表達自我, 有時化不堪為不凡, 或化普通為深刻, 幫助品牌背後的主體 透過美好的體驗表達自我。 但若是 請你設計的體驗是死亡, 而品牌背後的主體 是你的母親呢?
This was the design challenge I was faced with last year when my mom was diagnosed with stage four cancer, and she asked us to support her end of life. For 12 years, she was in remission from a previous cancer. She had a tumor behind her ear, and this time it came back as bone cancer in one of her vertebrae. What we all thought was back pain from arthritis revealed itself to be the worst. It was the beginning of the end of her life.
這是我去年面臨的設計挑戰── 當母親被診斷為癌症第四期, 她請我們支持她渡過生命盡頭。 12 年來,她一直處於 前次癌症的緩解期。 她先前在耳後長了腫瘤, 現在轉移至脊椎的骨癌。 我們以為只是關節炎引起的背痛, 結果卻是最壞的可能。 這是她生命盡頭的序曲。
But first, let me tell you about my mom. She was born in China in 1948. She and her twin brother grew up in a large family. Her mother was the second wife to her father and second wives and their children weren't viewed in the most positive light because it was just the cultural norm of the time. And growing up in communist China in the 1950s as a daughter and not a son meant that my mom was not the pride of the family. And she knew she wanted better and needed to get out. So she got tough, developed thick skin and decided to fight for her life. She fled China to Hong Kong, and when she was 22 she married my dad and they made their life in the United States. And she continued to fight. She was persistent, fearless. She never took no for an answer. We always said that she could charm the skin off of a snake or just whip it into a straight line.
但首先,讓我介紹我的母親。 1948 年她出生於中國。 她和孿生兄弟成長於大家庭。 她的母親是二房, 而二房的子女並不被認可, 當時的文化就是如此。 在 1950 年代共產主義下的中國, 身為女兒而非兒子 意味著我母親不會是家族的驕傲。 她知道自己渴求的 是更好的,所以得出走。 於是她學著堅強, 學著厚著臉皮,為自己而爭取。 她從中國逃到香港, 22 歲時她嫁給了父親, 然後他們在美國展開生活。 她繼續挺身爭取。 她意志堅定、無所畏懼。 她從不輕言放棄。 我們總說她魅力非凡, 能夠軟硬兼施。
(Laughter)
(笑聲)
Growing up with our mom, she fought for my sisters and I to get into the best classes in school, even though they were full. She fought for a prime real estate location for my dad so he could start his own business. And as a teenager with me, we fought a lot over bad boyfriends, body piercings, punk music. It's always true when they say mom's always right.
在母親的教育下, 她為女兒們爭取進入最好的班級, 即使原已額滿。 她為父親爭取最佳的地段 以利其開業。 在我青春期時, 我們常為不理想的男友、 穿洞、龐克音樂而爭執。 「媽媽永遠是對的。」 這句話一點也沒錯。
The cancer she had in 2004 gave her a preview into her death. At that time, she had endured a lot of radiation and treatments. A lot of radiation involved the side of her brain, and she never forgot how the mental and physical side effects made her feel. Overcoming that cancer was a source of pride for her, as well as traveling the world with my dad, watching all of her daughters get married and seeing her grandbabies grow up into teenagers. Her world was filled with beautiful experiences and a lot of color. But she never talked about the shades of gray. She never talked about how that preview into her death gave her 12 years to silently prepare and brace herself for the end. This time, when we gathered around her in the hospital, she had an announcement to make. She said that she did not want to do any treatments, no surgery. She was ready to go. She looked at us point blank and said that. She did not want to live life trapped to a bed, unable to feed herself, unable to use the bathroom for herself. She did not want to become a vegetable. And she wanted to exit this world knowing exactly who she was. She was adamant.
2004 年的癌症讓她預窺死亡。 當時她忍受了很多放射治療。 她的側腦接受大量的放射治療, 她從未忘記 副作用對精神和身體的影響。 戰勝癌症是她驕傲的源泉, 還有和父親一同環遊世界、 看著她所有的女兒結婚 及孫子們長成青少年。 她的世界多采多姿。 但她從未提起心中的陰影。 她從未提過──預窺死亡 給了她 12 年默默準備 並接受生命盡頭。 這次,當我們在醫院, 圍繞在她身邊, 她有事宣布。 她說不想接受任何治療或手術。 她已準備迎向終點。 說這些話時她堅決地看著我們。 她不希望困在床上, 無法自己進食, 無法自行解便。 她不想成為植物人。 她希望離世之際,仍有自我意識。 她的態度堅決。
In the state of Washington where my mom lived, Death With Dignity has been in effect since 2009. And for those of you who aren't familiar, Death With Dignity is legislation that empowers individuals to decide for themselves to move on when science has confirmed the end is near. It gives individuals the legal right to decide and act for themselves to move on when faced with a terminal illness. Death With Dignity is legal in five out of 50 US states, and is one of many end-of-life care options available. It was this particular end-of-life care option that my mom wanted. And she asked us to support her through this. We were devastated and none of us knew what to say. So she spoke first. "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, but if you do, I like yellow ones."
在母親住的華盛頓州── 《尊嚴善終法》自 2009 年起生效。 有些人或許不熟悉此法案, 《尊嚴善終法》是部法案: 賦予個人積極自主的善終權, 當科學已證實生命將盡。 它賦予個人合法權利 在面臨絕症時能自主生死。 《尊嚴善終法》在美國 50 州中的 5 州已合法, 是眾多臨終照護的選項之一。 這便是母親想要的臨終照護選擇。 她請我們支持這個決定。 我們很震驚, 沒人知道該說些什麼。 於是她先開口了: 「我想在家裡舉行私人儀式, 只有家人參加。 這就是我想穿的衣服 而且不用買花, 但如果你們堅持, 我喜歡黃色的花朵。」
(Laughter)
(笑聲)
"I want my ashes scattered on Mount Rainier, and afterwards for you all to have a dinner party, you know, nothing fancy, casual, maybe with some Southern-style food and some music." She knew exactly what she wanted. She wanted a celebration.
「我希望骨灰散在雷尼爾山, 之後你們辦場晚宴, 不用鋪張,自在就好, 也許搭配美國南方風格 的食物和些音樂。」 她很清楚自己想要什麼。 她想要一場慶祝。
After a lot of tears and listening, hospice came in to consult with us on next steps. And we learned that we needed signatures from two doctors in order to proceed with Death With Dignity. Her primary care physician said he would sign, but only if her oncologist signed off first. Her oncologist was shocked. He was so surprised that she was ready to make such a swift decision. He said, "You know, like, it's stage four cancer, but you could live for another six months, maybe even longer. Don't you want to have more time to live? Don't you want to enjoy life for as long as you can?" My mom said she wanted Death With Dignity. "This is my time. This is what I want." He told her no. We were really confused. Her cancer was confirmed, hospice just came in and walked us through the process. As a doctor and an educated man of science, he is trained to problem-solve diseases. His expertise is to find solutions for illnesses, not to relate to my mom's personal view on life. We needed to understand where he was coming from. He was honest and said, "Look, I'm new to Washington. I just transferred here from California where this law was recently made legal. I have never experienced this before. I need time to think about it. No, I won't sign." He looked at my sisters and I to back him up. And we looked at our mom and she was overcome with disappointment and burst into tears. This was a woman who never took no for an answer. And after 12 years of preparing for her end, she found herself fighting again. She was fighting for her life to end, for her right to die.
在許多眼淚及聆聽之後, 安寧照護提供諮詢後續的流程。 我們得知需要兩位醫生的簽名 以推進尊嚴善終的執行。 初級照護醫師願意簽署, 前提是腫瘤科醫師先簽了名。 她的腫瘤科醫師很震驚。 他訝異她這麼快地決定。 他說「 這是第四期癌症, 但妳還有六個月,甚至更久, 妳難道不想活久一點嗎? 妳不想盡可能地享受生命嗎? 」 母親說她想執行尊嚴善終。 「我的時候到了。這是我想要的。」 他拒絕她。 我們不知所措。 她的癌症確診, 安寧照護剛引導我們了解流程。 作為醫生和受科學教育的人, 他的專業訓練是治療疾病。 他的專長是為疾病找到解方, 而非同理我母親的人生觀。 我們必須理解他的背景。 他老實地說「我剛來華盛頓。 我剛從加州轉過來, 該法案近期才生效, 我沒有經驗。 我需要時間思考。 不,我不會簽字。 」 他盼望我們姐妹會支持他。 我們望向母親, 她失望地淚流滿面。 這是位從不輕言放棄的女性。 在 12 年後,準備好面對臨終之際, 她發現仍得為自己爭取。 這次為終止生命及自主死權而爭。
In hospice and palliative care, there are three main focus areas for support. Comfort, spirituality and peace. It's a testament to our society that this level of care is available, ranging from pragmatic to natural and holistic, if you can afford it. As a family, we decided to care for our mom at home. And in order to create a comfortable space for her, we needed to get creative.
在安寧照護及緩和療護中, 主要著眼三個層面: 舒適度、心靈、安寧。 這些照護的存在, 亦顯現文明水準, 從務實到自然、全人照護, 若經濟條件許可。 我們家人共同決定 在家中照護母親。 為了創造讓她舒適的環境, 我們得發揮創意。
In the initial stages of her diagnosis, she was mobile with the help of a walker, even though she was frail. In order to get blood circulation flowing through her legs, we needed to get creative with her exercises. We decided to have fun. So we would see how many Beatles songs it would take for her to walk around the kitchen island, X amount of times, all of us singing along to "Love Me Do" and "Let It Be." We watched YouTube videos to learn how to give her haircuts and the house didn't have a shower on the main floor, so on the weekends, we would sneak our mom into my sister's office and use the handicap accessible shower. This deluge of hot steaming water, my mom's body felt so amazing to her. It was one of the last little luxuries that she wished for compared to the sponge baths that we gave her. A lot of her time was spent resting in bed and we would watch documentaries together and classic Warren Beatty movies. Sometimes she'd ask me for a mood board of beautiful images of Mount Rainier, so she could look forward to where ashes would rest.
在初期,她能藉由助行器走動, 儘管她很虛弱。 為促進腿部血液循環, 我們得在她的運動上發揮巧思。 我們決定要玩得開心。 我們看放幾首披頭四的歌 能讓她繞廚房中島幾圈, 我們跟著唱《Love Me Do》 和《Let It Be》。 我們看 YT 影片學自助理髮。 房子一樓沒有淋浴室設備, 所以在周末, 我們將母親偷渡 進入姐妹的辦公室 使用無障礙淋浴。 豐沛的熱水澡 讓母親的身體感覺無與倫比。 這是她最後的小奢求── 比起我們給她的海綿浴。 她大多臥床休息, 我們會一起看紀錄片 和經典的華倫·比提的電影。 有時她向我要雷尼爾山 的優美情境圖, 讓她能想見骨灰的長眠處。
Once a month she would see her oncologist for status updates, and it was very clear from test results that her cancer was growing. Every time she'd plead with him to have her Death With Dignity wish fulfilled, and he'd say no, and she'd go home disappointed. At this point, she was in a chest brace and a wheelchair because her bones could no longer support her.
每月一次,她回診看腫瘤科, 從檢查結果中 清楚地看出腫瘤在長大。 每次她懇求他, 讓她實現尊嚴善終的願望, 他拒絕, 她失望地回家。 在這個階段, 她戴著胸腔支撐器,坐著輪椅, 因為骨頭無法支撐她了。
It’s easy for us to think of design as aesthetics or creating visuals. Design is also a tool for communication, a combination of creativity and empathy. Earlier, I referred to my mom's death as a design challenge, which I know sounds strange and off-putting. It's a challenge because for obvious reasons, but it involved design because it required us to talk about it, to talk about it with her doctors and hospice and with our families to make decisions. By having the conversation, it allowed us to come together to grasp what was happening, so we could have a shared language with a common goal for understanding.
我們傾向將設計 想成美學或設計視覺。 設計也是溝通的工具, 結合創意和同理心。 剛剛我將母親的臨終 比喻為設計挑戰, 我知道這聽來奇怪和令人反感。 這很明顯的是項挑戰, 但這涉及設計因為它需要被討論, 和醫生、安寧照護及家人討論, 以做出決定。 透過對話, 讓我們一同掌握狀況, 讓我們有共通的語言 和共同的目標。
One night, when I was sitting next to my mom, I was caressing her arm, and I noticed that the texture of her skin was unusually dry. And the color of her flesh was dull. I had been so focused on executing her end-of-life wishes that I realized, I didn't know what the end of her life felt like. I didn't know what she was going through because I just accepted it. So I asked her, "What does it feel like?" "What does what feel like?" "Cancer. What does your cancer feel like?" "Fire," she said. "My bones are on fire and everywhere under my skin is burning. And every time I move, it just makes it worse. My whole body is on fire." After a moment, she said, "Are you mad at me?" "No. Why would I be mad at you?" "For wanting to move on, for wanting to go to heaven, because it's my time?" I looked her in the eye and I said, "I'm really proud of you. I think you're brave. I think you're a designer like me." She perked up. She was like, "Oh, really? You think I'm a designer?" "Yes. You're creating the experience that you want to have. You're designing how you say goodbye." She took my hand and said, "You understand."
有一晚,我坐在母親身邊, 我輕撫著她的手臂, 我注意到她的皮膚異常乾燥。 而她的膚色黯沉。 我一直專注於執行她的臨終願望, 我才意識到:我不知道 她的生命盡頭感覺如何。 我不知道她經歷了什麼 因為我一昧地接受。 於是我問她:「這是什麼感覺?」 「什麼的感覺?」 「癌症。 癌症帶給妳什麼樣的感覺?」 她說:「火。」 「 我的骨頭著了火, 皮膚下的每吋都在燃燒。 每次移動,就更不舒服。 我的整個身體都在燃燒。 」 片刻之後, 她說:「妳生我的氣嗎?」 「沒有。我為什麼要生妳的氣?」 「因為想要放下, 因為時候到了,我想去天堂? 」 我看著她的眼睛說, 「我真的以妳為傲。 我覺得妳很勇敢。 我覺得妳就像我,也是設計師。」 她精神一振。 她說:「 真的? 妳認為我是設計師 ?」 「是的。 妳在創造想要的體驗。 妳在設計說再見的方式。 」 她拉著我的手說: 「妳懂。」
The next visit to her oncologist was her last one. What started as a small cluster in one vertebrae expanded throughout her spine and pushed its way forward into her sternum and her rib cage. All within four months. This time there was no begging. He said, "The cancer is growing really fast." She looked at him in the eye and said, "I know." Two days later, she got her two signatures and signed legal documents and prescription to proceed with Death With Dignity. The fight was over and she won. It was actually one of the happiest days of her life. I want to be clear and say that I don't think it was wrong of the oncologist to hesitate on Death With Dignity. It was his responsibility to have a conversation with us, to guide us in understanding and needing us to be curious about all medical treatments that were available until it was very clear her illness was terminal. And I completely respect him for that. It was also our responsibility to have a conversation with him, to guide him in understanding our mom's wishes for her end of life. He needed to be curious about that alternative as well.
下次的腫瘤科回診便是最後一次。 開始只是一節脊椎的小癌細胞簇, 擴散到整個脊椎, 持續擴散進她的胸骨和肋骨。 全發生在四個月之內。 這次無須再懇求。 他說:「癌細胞增生地非常快。」 她直視著他說:「我知道。」 兩天後, 她拿到兩位醫師的簽名、 已簽核的法律文件和處方, 以執行尊嚴善終。 戰鬥結束了,她贏了。 那其實是她人生中 最快樂的日子之一。 我想清楚地表達: 我不認為腫瘤科醫生 對尊嚴善終的猶豫有誤。 與我們對話是他的責任, 引導我們理解 並讓我們好奇: 任何現行可能的醫療選項, 直到病情確診是末期。 我完全尊重他的立場。 與他對話也是我們的責任, 引導他理解母親對她臨終的想望。 他也需要對替代方法有所好奇。
When it came time to fill the prescription, we learned there were two options. The first was a liquid form. It's immediate effect varied upon body type and could take anywhere from two hours to two days to go into effect. We were also informed that it can burn the throat going down and patients have a hard time swallowing it because sometimes they have gag reflexes and it's hard for family members to watch. The cost of that medicine was 400 dollars. The second option was a pill. It's effect much faster, much easier for patients to swallow. The cost of this was 4,000 dollars. Neither were covered by insurance. Our health care system policies and regulations are intended to protect and support us. What patient scenarios and experiences are yet to be designed, what systems need to be revisited? Because at this moment, there was a lot here that could use a redesign. We were so close to bringing her peace. Her dying was complicated enough. How difficult does the system need to be in order to give a patient a peaceful death? The price-tag difference was eye-popping for sure, but it wasn't our decision to make, this was our mom's call. She said, "That's crazy. Are you kidding me? I'll take the 400-dollar one, I'm leaving anyway."
屆申請處方時, 我們得知有兩個選項。 第一種是藥水。 藥效快慢因體質而異, 從兩小時到兩天不等。 我們也被告知 喝下時可能灼傷喉嚨, 患者會難以嚥下, 有時病人會有作嘔反射, 家人看了會不忍。 這藥價是 400 美元。 第二種是藥丸。 藥效快多了, 讓患者更容易吞嚥。 此藥價是 4,000 美元, 兩藥皆非保險給付。 我們的醫療保健系統和政策法規 旨在保護和支持我們。 哪些臨終情境和體驗待重新設計? 哪些系統需被重新審視? 因為此刻, 仍有許多值得重新設計之處。 眼看我們就能讓她平靜了。 她的臨終已經夠複雜了。 整個作業機制需要多複雜, 才能讓病人平靜地面對臨終。 無疑地這兩種藥的價差驚人, 但這得由母親作主,而非我們。 她說「這太瘋狂了。在開玩笑嗎? 就用 400 元的,我都要走了。」
(Laughter)
(笑聲)
The night before her death, we had a dinner party at her house at her request. We made a beautiful feast of roast chicken, colorful salad, strawberry shortcake, sparkling wine. We made a playlist of her favorite tunes. It was a mix of the Bee Gees, Dusty Springfield and Elvis. We told stories, we laughed, she gave a toast. She was so happy, she was glowing the whole night. The morning of her last day, an end-of-life care assistant came to the house to help us through the process. As preparations were underway, I kept stealing glances at her to see how she was doing. Every time I saw her, her eyes were bright and her mouth was smiling and she just kept giving me a thumbs up because she wanted us to feel brave.
在她離世的前一晚, 應她的要求,我們在家辦了晚宴。 我們張羅了盛宴: 有烤雞、繽紛的沙拉、 草莓鮮奶油蛋糕、氣泡酒。 我們以她的愛歌設計歌單。 包含:比吉斯、達絲提. 史普林菲爾和貓王。 我們笑談往事,她舉杯祝酒。 她好開心,整晚神采奕奕。 她最後的早晨, 臨終照護助理來到家中 協助我們完成整個流程。 隨著籌備工作的進行, 我一直偷瞄她,看她狀態如何。 每次我看她, 她的眼神明亮, 她的嘴角微笑, 她一直對我比「讚」 因為她希望我們勇敢。
We learned there were three medications in total. The first was to slow down her heart rate. The second was for anti-nausea and the third was her final medication. The assistant, before he handed her the medication, said that by law, she had to declare out loud that it was her intention to go to sleep and to not wake up. By law, none of us could help her hold the cup or help her drink it, she needed to do it for herself. And he warned her that it could burn and to take her time. My mom took the cup with two hands and pounded it back like a shot of whiskey.
我們得知:總共要服三個藥。 第一個藥,降低她的心率; 第二個藥,減緩噁心; 第三個,就是臨終的藥。 助理把藥遞給她之前,說道: 依法,她必須大聲聲明: 就此長眠是她的意願。 依法,誰都不能幫 她拿杯子或協助服藥, 她必須自己完成。 他提醒她可能會有 灼燒感,慢慢來。 母親用兩隻手拿著杯子, 像喝小杯威士忌般 猛然一口飲下。
(Laughter)
(笑聲)
She looked at my dad and smiled, closed her eyes. And in 45 minutes she was gone.
她看著父親並微笑, 閉上了眼睛。 45 分鐘後她便安息了。
I know the experience that we had is not common. For many people, they don't get the chance to say goodbye the way that we did. For some, death is full of uncertainty and can often be a waiting game. Watching our mom deteriorate wasn't easy and neither was caring for her. There were many parts of the experience that were not beautiful. That involved the expected tubes, needles, bed pans and fluorescent lights. Caring for her was possible because my sister Nancy took on the difficulty of moving mom into her house, and my sister Jenny is a nurse and managed her pain until the very end. In an odd way, there was a lot of comfort because we were figuring out this whole mess together. I can't imagine what it would have been like if my mom lived in a state where this was not legal. How long and how painful would it have been? This year, 30 US states are considering Death With Dignity. And what that means for actual legislation is unknown, but what is clear is that there are a lot more people who want to have a say. All over the world, there are many cultures and families who practice their own rituals of death. These rituals are expressions based on their unique situations and environments.
我知道我們這樣的經歷並不常見。 有許多人, 沒能像我們這樣道別。 對有些人而言, 死亡則充滿了不確定性, 只能伺機而動。 看著母親的病況惡化並不好受, 照顧她亦然。 有許多經歷並不美好。 包含意料中的管子、針筒、便盆 和刺眼的日光燈。 居家照顧她是可行的, 因為姐妹南希接下了重擔, 讓母親搬進她家; 姐妹珍妮是位護士, 負責疼痛控制直到最後。 出乎意料地,過程中也有許多慰藉 因為我們共同解決難題。 我無法想像這一切會是如何, 若母親住在此案未合法的州。 這一切會多漫長而痛苦? 今年,美國有 30 個州 正在考慮《尊嚴善終法》。 這離實際立法多遠仍屬未知, 但很清楚的是: 有許多人想要發言權。 世界各地, 不同的文化和家庭 有各自奉行的臨終儀式。 這些儀式也是基於 各別情境和環境的表現。
If you could design your own death, what would the experience be like, and how would you want it to feel? I'm not a health care professional and I'm not an inventor of science. I'm a brand designer that creates experiences by connecting with human emotion. What I know from my mom's experience is that it gave us the tools to talk about death. By sharing her story with friends and strangers, I've learned there is a lot of curiosity behind this. By having the conversation, it helps us to perhaps reframe or even rebrand death from feeling scary or desolate or bleak to re-imagining it as honest, noble and brave.
若你能設計自己的臨終, 那會是怎樣的體驗? 你希望是什麼樣的感覺呢? 我並非醫療照護專業 亦非科學創新者。 我是位品牌設計師, 透過連結人類情感創造體驗。 我從母親的經歷學到: 這給我們談論死亡的工具。 透過與朋友和陌生人 分享她的故事, 我得知人們對此充滿好奇。 透過對話, 協助我們重新構架甚或重塑死亡: 從感到害怕、荒涼或淒涼, 轉而重新想作是 誠實、崇高、勇敢的。
My mom was born a fighter and she became a designer at the end of her life. Today, she would have turned 69 years old and it's her birthday wish that I share her story with you. Death is a universal human experience. What I've shared with you is more than a conversation between myself and my family. It's a conversation that belongs to all of us. Patients, doctors, healthcare providers, policy makers, family members, together we all have a say in creating beautiful experiences from the very beginning, but more importantly, at the end.
我母親生為一名鬥士, 死為一名設計師。 今天是她 69 歲冥誕, 我和你們分享她的故事 是她的生日願望。 死亡是普世的經驗。 我與大家分享的 不僅是我和家人間的談話。 這也是場屬於所有人的對話。 患者、醫生、醫療照護者、 政策制定者、家人, 我們都有發言權, 為的是共創美好的體驗, 自始,但更重要的是,至終。
Thank you. (Applause)
謝謝。 (掌聲)