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

Transcriber:

Translator: Andre . Reviewer: Maria Nainggolan

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

Apa yang mau Anda ciptakan?

their personalities and motivations behind the why of what they do

Di mana Anda akan membagikannya,

dan apa yang Anda mau mereka rasakan?

to help them express themselves,

Sebagai seorang desainer merk,

sometimes transforming ugly moments into unique ones,

Saya banyak bertanya

dan mempraktikkan empati untuk mengerti dari orang lain

or turning something ordinary into something memorable.

kepribadian mereka dan motivasi di balik apa yang mereka lakukan

To help the face behind a brand

untuk membantu mereka mengekspresikan diri mereka

express themselves through beautiful experiences.

terkadang mengubah momen-momen buruk menjadi unik

But what happens

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

atau mengubah sesuatu yang biasa saja menjadi mengesankan

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

Untuk membantu wajah di balik sebuah merk

mengekspresikan diri mereka melalui pengalaman yang indah

This was the design challenge I was faced with last year

Tetapi apa yang terjadi

saat hal yang harus Anda desain adalah kematian?

when my mom was diagnosed with stage four cancer,

and she asked us to support her end of life.

dan wajah di balik merk itu adalah ibu Anda sendiri?

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

Inilah tantangan yang saya dapat tahun lalu

She had a tumor behind her ear,

Saat ibu saya didiagnosis mengidap kanker stadium empat,

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

dan dia meminta kami membantu kematiannya.

What we all thought was back pain from arthritis

Dia mendapat remisi 12 tahun dari kanker sebelumnya.

revealed itself to be the worst.

Dia punya tumor di belakang telinganya,

It was the beginning of the end of her life.

dan kali ini, tumornya kembali menjadi kanker di tulang belakangnya.

But first, let me tell you about my mom.

Yang kami kira hanyalah sakit karena radang sendi

She was born in China in 1948.

ternyata adalah hal yang paling buruk.

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

Itulah awal dari akhir kehidupannya.

Her mother was the second wife to her father

Tetapi pertama, saya akan bercerita tentang ibu saya.

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

Dia dilahirkan di Tiongkok pada tahun 1948.

because it was just the cultural norm of the time.

Dia dan saudara lelaki kembarnya tumbuh di keluarga besar.

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

Ibunya adalah istri kedua dari ayahnya

dan anak mereka tidak dipandang baik oleh orang

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

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

karena begitulah normanya pada saat itu.

So she got tough,

developed thick skin and decided to fight for her life.

Dan tumbuh di Tiongkok pada tahun 1950 sebagai anak perempuan

berarti ibu saya bukanlah kebanggaan keluarganya.

She fled China to Hong Kong,

and when she was 22 she married my dad

Dan dia tahu dia mau yang lebih baik dan harus keluar.

and they made their life in the United States.

Jadi dia menjadi kuat,

And she continued to fight.

Dia bertebal muka dan berjuang untuk hidupnya.

She was persistent, fearless.

Dia kabur dari Tiongkok ke Hong Kong,

She never took no for an answer.

dan di umur 22 dia menikah dengan ayah saya

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

dan membangun hidup mereka di Amerika Serikat.

or just whip it into a straight line.

Dan dia terus berjuang.

(Laughter)

Dia teguh, tanpa rasa takut.

Growing up with our mom,

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

Dia tidak pernah menerima kata “tidak”.

even though they were full.

Kami selalu berkata bahwa dia bisa membuat ular melepas kulitnya

She fought for a prime real estate location for my dad

atau membuatnya berbaris lurus.

so he could start his own business.

(Tertawaan)

And as a teenager with me,

Tumbuh besar dengan ibu kami,

dia berjuang agar anak-anaknya bisa masuk ke kelas terbaik di sekolah,

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

meskipun kelasnya sudah penuh.

Dia berjuang mendapatkan lokasi rumah bagus untuk ayah saya

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

agar dia bisa memulai bisnisnya.

Dan saat saya remaja,

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

kami bertengkar tentang pacar yang buruk, tindikan telinga, musik punk.

At that time,

Memang benar kalau orang bilang bahwa ibu selalu benar.

she had endured a lot of radiation and treatments.

A lot of radiation involved the side of her brain,

Kanker yang dia dapat di tahun 2004 memberikan bayangan tentang kematiannya.

and she never forgot

how the mental and physical side effects made her feel.

Pada waktu itu,

Overcoming that cancer was a source of pride for her,

dia sudah melewati banyak perawatan dan radiasi.

as well as traveling the world with my dad,

Banyak radiasi yang mengenai sisi samping otaknya.

watching all of her daughters get married

dan dia tak pernah lupa

bagaimana perasaan dia akibat efek samping mental dan fisiknya.

and seeing her grandbabies grow up into teenagers.

Mengalahkan kanker itu menjadi kebanggaan baginya,

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

dan juga keliling dunia dengan ayah saya,

melihat semua anak perempuannya menikah

But she never talked about the shades of gray.

She never talked about how that preview into her death

dan melihat cucu-cucunya tumbuh menjadi remaja.

Dunianya dipenuhi pengalaman indah yang sangat berwarna.

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

Tetapi dia tidak pernah membahas sisi buruk lainnya.

Dia tidak pernah bicara tentang bagaimana kanker itu

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

she had an announcement to make.

memberinya 12 tahun untuk mempersiapkan kematiannya.

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.

Kali ini, saat kami berkumpul di rumah sakit

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

Dia membuat sebuah pengumuman.

Dia bilang dia tidak ingin menjalani perawatan atau operasi apa pun.

unable to feed herself,

unable to use the bathroom for herself.

She did not want to become a vegetable.

Dia siap untuk pergi.

Dia menatap mata kami dan mengatakannya.

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

Dia tidak ingin hidup di atas kasur,

She was adamant.

tidak bisa menyuapi diri sendiri,

tidak bisa pergi ke toilet sendiri.

In the state of Washington where my mom lived,

Dia tidak ingin menjadi tak berdaya.

Death With Dignity has been in effect since 2009.

Dan dia mau pergi dari dunia ini dengan mengingat siapa dirinya.

And for those of you who aren't familiar,

Death With Dignity is legislation

Dia bersikeras.

that empowers individuals to decide for themselves to move on

Di negara bagian Washington tempat ibu saya tinggal,

Kematian Dengan Kehormatan sudah diterapkan sejak 2009.

when science has confirmed the end is near.

Dan bagi yang belum tahu sebelumnya,

It gives individuals the legal right

itu adalah undang-undang

yang memberi hak bagi orang-orang untuk memilih kapan mereka akan pergi

to decide and act for themselves to move on

when faced with a terminal illness.

saat akhir hidup mereka sudah dipastikan secara medis.

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

Peraturannya memberi semua orang hak legal

untuk menentukan dan bertindak sendiri

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

saat menghadapi penyakit mematikan.

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

And she asked us to support her through this.

Undang-undang itu telah diterapkan di 5 dari 50 negara bagian AS

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

dan merupakan salah satu perawatan akhir hidup yang tersedia

So she spoke first.

Perawatan inilah yang dipilih ibu saya.

Dan dia meminta kami untuk mendukungnya menjalani ini.

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

Kami merasa sedih dan tidak tahu harus berkata apa.

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

Jadi dia berbicara duluan.

but if you do, I like yellow ones."

(Laughter)

"I want my ashes scattered on Mount Rainier,

“Ibu mau upacara pribadi di rumah, hanya untuk keluarga dekat.

and afterwards for you all to have a dinner party,

Ini baju yang ibu mau pakai dan jangan membeli bunga,

you know, nothing fancy, casual,

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

Tetapi kalau kamu mau, ibu suka yang berwarna kuning.”

(Tertawaan)

She knew exactly what she wanted.

“Ibu mau abu ibu ditebarkan di Gunung Rainier,

She wanted a celebration.

dan setelah itu kalian semua makan malam bersama,

After a lot of tears and listening,

ya, yang sederhana saja,

mungkin dengan makanan khas Selatan sambil mendengar musik.”

hospice came in to consult with us on next steps.

Ibu saya tahu apa yang dia mau

And we learned that we needed signatures from two doctors

Dia mau sebuah perayaan.

in order to proceed with Death With Dignity.

Setelah banyak air mata dan mendengar,

Pihak rumah sakit menghubungi kami tentang langkah selanjutnya.

Her primary care physician said he would sign,

Dan kami mendengar kalau kami butuh tanda tangan dari dua orang dokter

but only if her oncologist signed off first.

Her oncologist was shocked.

untuk menjalani program Kematian Dengan Kehormatan.

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

Dokter umum ibu saya setuju untuk menandatanganinya

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

tetapi hanya jika onkolognya menandatanginya duluan.

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

Onkolog ibu saya terkejut.

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

Dia tidak menyangka ibu saya siap mengambil keputusan itu dengan cepat.

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

Dia bilang, “Ini memang kanker stadium empat,

My mom said she wanted Death With Dignity.

tetapi Anda bisa hidup enam bulan lagi, atau mungkin lebih lama.

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

Apa Anda tidak mau hidup lebih lama lagi?

He told her no.

Apa Anda tidak mau menikmati hidup selama mungkin?”

We were really confused.

Her cancer was confirmed,

Ibu saya berkata tidak.

hospice just came in and walked us through the process.

“Ini sudah waktu saya. Inilah yang saya mau.”

Onkolognya menolak.

As a doctor and an educated man of science,

he is trained to problem-solve diseases.

Kami sangat kebingungan.

Kanker ibu saya sudah dikonfirmasi,

His expertise is to find solutions for illnesses,

Pihak rumah sakit telah datang dan menjelaskan prosesnya kepada kami.

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

Sebagai seorang dokter dan orang terpelajar

dia terlatih untuk menangani penyakit.

We needed to understand where he was coming from.

Keahliannya adalah menemukan solusi untuk penyakit,

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

bukan untuk mencampuri pandangan hidup ibu saya.

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

Kami mau mencari tahu apa alasan dokternya.

I have never experienced this before.

I need time to think about it.

Dia jujur dan berkata, “Saya baru pindah ke Washington.

No, I won't sign."

Saya pindah dari California di mana hukum ini baru diterapkan.

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

Saya belum pernah mengalami ini.

And we looked at our mom

and she was overcome with disappointment and burst into tears.

Saya perlu waktu untuk berpikir.

Tidak, saya menolak.”

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

Dokternya menatap saya dan saudara saya untuk mendukung dia.

And after 12 years of preparing for her end,

Dan kami melihat ibu kami

she found herself fighting again.

dan dia merasa sangat kecewa dan langsung menangis.

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

Ibu saya adalah wanita yang tidak pernah menerima kata “tidak”.

Dan setelah 12 tahun mempersiapkan kematiannya,

In hospice and palliative care,

there are three main focus areas for support.

dia harus berjuang lagi.

Dia berjuang agar hidupnya berakhir, untuk hak dia untuk meninggal

Comfort, spirituality and peace.

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

Di perawatan akhir dan perawatan paliatif,

ada tiga hal utama yang menjadi fokus perawatan.

ranging from pragmatic to natural and holistic,

if you can afford it.

Kenyamanan, spiritualitas dan ketenangan.

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

Ini adalah bukti untuk masyarakat kita bahwa perawatan seperti ini tersedia,

And in order to create a comfortable space for her,

Mulai dari yang pragmatis, sampai natural dan holistik,

we needed to get creative.

kalau Anda bisa membelinya.

Sebagai keluarga, kami memutuskan untuk merawat ibu kami di rumah.

In the initial stages of her diagnosis,

she was mobile with the help of a walker,

Dan untuk menciptakan lingkungan yang nyaman baginya

even though she was frail.

kami harus kreatif.

In order to get blood circulation flowing through her legs,

we needed to get creative with her exercises.

Di tahap-tahap awal diagnosisnya,

We decided to have fun.

ibu saya berjalan dengan alat bantu jalan,

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

meskipun dia sudah lemah.

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

Untuk meningkatkan sirkulasi darah di kakinya,

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

kami harus kreatif dengan olahraganya.

Kami memilih untuk bersenang-senang.

We watched YouTube videos to learn how to give her haircuts

Jadi kami melihat berapa banyak lagu Beatles yang dibutuhkan

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

untuk dia berjalan memutari dapur sekian kali,

so on the weekends,

sembari kami menyanyikan lagu “Love Me Do” dan “Let It Be.”

we would sneak our mom into my sister's office

and use the handicap accessible shower.

Kami menonton video YouTube untuk belajar cara memotong rambutnya

This deluge of hot steaming water,

dan tidak ada kamar mandi di lantai dasar rumah kami,

my mom's body felt so amazing to her.

jadi di akhir pekan,

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

kami diam-diam membawa ibu kami ke kantor saudara perempuan saya

dan memakai kamar mandi untuk penyandang ketunaan.

compared to the sponge baths that we gave her.

Kenikmatan air panasnya

A lot of her time was spent resting in bed

membuat ibu saya merasa sangat senang.

and we would watch documentaries together

Itu salah satu kemewahan kecil terakhir yang dia inginkan

and classic Warren Beatty movies.

dibandingkan mandi dengan spons seperti biasanya.

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

Dia menghabiskan banyak waktunya di kasur

jadi kami menonton film dokumenter bersama-sama

so she could look forward to where ashes would rest.

dan film-film klasik Waren Beatty.

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

Terkadang dia meminta papan berisi gambar cantik Gunung Rainier

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

supaya dia bisa melihat di mana abunya akan diletakkan.

Every time she'd plead with him

to have her Death With Dignity wish fulfilled,

Setiap bulan dia akan menghubungi onkolognya untuk berita terbaru,

and he'd say no,

and she'd go home disappointed.

dan hasil tesnya jelas menunjukkan bahwa kankernya semakin parah.

At this point,

she was in a chest brace and a wheelchair

Setiap kali dia memohon

because her bones could no longer support her.

untuk permintaan kematiannnya dikabulkan

onkolognya akan menolak,

dan dia akan pulang dengan rasa kecewa.

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

Di titik ini,

dia sudah memakai alat penyangga dada dan kursi roda

or creating visuals.

karena tulangnya sudah tidak bisa menopang tubuhnya.

Design is also a tool for communication,

a combination of creativity and empathy.

Mudah bagi kita untuk menganggap desain sebagai keindahan

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

which I know sounds strange and off-putting.

atau menciptakan gambaran.

Desain juga merupakan alat komunikasi.

It's a challenge because for obvious reasons,

Kombinasi dari kreativitas dan empati.

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

Di awal tadi, saya berkata bahwa kematian ibu saya adalah tantangan desain,

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

dan saya tahu sekilas terdengar aneh.

to make decisions.

Itu adalah tantangan karena alasan yang jelas,

By having the conversation,

Tetapi itu adalah desain karena kita harus membicarakannya,

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

berdiskusi dengan para dokter dan pihak rumah sakit dan keluarga kami

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

untuk mengambil keputusan.

One night,

Dengan berbicara,

when I was sitting next to my mom,

kami dapat berkumpul dan memahami apa yang sedang terjadi,

I was caressing her arm,

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

agar kami bisa saling memahami maksud satu sama lain.

And the color of her flesh was dull.

Pada satu malam,

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

saat saya sedang duduk di sebelah ibu saya,

saya mengelus tangannya,

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

dan saya sadar tekstur kulitnya lebih kering dari biasanya.

Dan warna dagingnya kusam.

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

Saya sangat terfokus untuk mengabulkan permintaan terakhirnya

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

sampai saya sadar, saya tak tahu bagaimana rasanya bagi dia.

"What does what feel like?"

"Cancer.

Saya tidak tahu apa yang dia rasakan karena saya hanya menerimanya.

What does your cancer feel like?"

"Fire," she said.

Jadi saya bertanya, “Bagaimana rasanya bu?”

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

“Apanya yang bagaimana?”

“Kanker.

Bagaimana rasanya kanker ibu?”

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

My whole body is on fire."

“Panas,” kata ibu saya

“Tulang ibu terbakar dan semuanya di bawah kulit ibu terbakar.

After a moment,

she said, "Are you mad at me?"

Dan setiap ibu bergerak, sakitnya semakin parah.

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

Sekujur tubuh ibu seperti terbakar.”

Setelah beberapa saat,

"For wanting to move on,

ibu saya berkata, “Kamu marah ya sama ibu?”

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

“Tidak. Untuk apa aku marah sama ibu?”

I looked her in the eye and I said,

"I'm really proud of you.

I think you're brave.

“Karena ibu mau pergi,

I think you're a designer like me."

karena ibu mau ke surga, karena sudah waktu ibu?”

She perked up.

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

Saya menatap matanya dan berkata,

"Yes.

“Aku sangat bangga sama ibu.

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

Menurutku ibu pemberani.

Menurutku ibu juga desainer seperti aku.”

You're designing how you say goodbye."

Dia tersenyum.

She took my hand and said,

Ibu saya bilang, “Masa? Menurut kamu ibu juga desainer?”

"You understand."

“Iya.

The next visit to her oncologist was her last one.

Ibu menciptakan pengalaman yang ibu mau sendiri.

What started as a small cluster in one vertebrae

Ibu mendesain cara ibu pergi sendiri.”

Dia memegang tangan saya dan berkata,

expanded throughout her spine

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

“Kamu mengerti.”

All within four months.

Kali berikutnya dia pergi ke onkolognya adalah kali terakhir.

This time there was no begging.

Tumor yang awalnya hanya ada sedikit di salah satu tulang belakangnya

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

menyebar ke seluruh tulang belakangnya

dan menembus tulang dada dan rusuknya.

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

Semuanya terjadi dalam empat bulan.

Kali ini ia sudah tidak memohon.

Two days later,

Dokternya berkata, “Kankernya tumbuh dengan cepat.”

she got her two signatures and signed legal documents

and prescription to proceed with Death With Dignity.

Ibu saya menatap matanya dan berkata, “Saya tahu.”

The fight was over and she won.

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

Dua hari kemudian,

kedua dokternya akhirnya menandatangani dokumennya

I want to be clear and say

dan resep obat untuk melanjutkan programnya.

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

to hesitate on Death With Dignity.

Perjuangannya telah selesai dan ibu saya menang.

It was his responsibility to have a conversation with us,

Sebenarnya itu salah satu hari terbaik dalam hidup dia.

to guide us in understanding

Saya mau menjelaskan dulu

and needing us to be curious about all medical treatments

bahwa menurut saya onkolognya tidak salah

that were available

karena ragu dengan program ini.

until it was very clear her illness was terminal.

Kewajiban dia memang untuk berdiskusi dengan kami,

And I completely respect him for that.

untuk membantu pemahaman kami

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

dan agar kami tahu tentang semua jenis perawatan

yang tersedia

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

sampai kami tahu pasti bahwa ibu kami sudah tak tertolong.

He needed to be curious about that alternative as well.

Dan saya menghormati keputusan dia.

Kami juga memiliki kewajiban untuk berdiskusi dengannya,

When it came time to fill the prescription,

we learned there were two options.

dan membantu dia memahami keinginan ibu kami untuk akhir hidupnya.

The first was a liquid form.

Dia juga perlu memahami solusi alternatif itu.

It's immediate effect varied upon body type

and could take anywhere from two hours to two days

Saat kami sudah harus memilih obat yang akan dipakai,

to go into effect.

Kami mendapat dua pilihan.

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

Yang pertama adalah obat cair.

Efeknya berbeda-beda untuk setiap orang

and patients have a hard time swallowing it

dan butuh waktu antara dua jam sampai dua hari

because sometimes they have gag reflexes

and it's hard for family members to watch.

untuk obatnya bekerja.

Kami juga diberi tahu bahwa obatnya dapat membuat tenggorokan terasa terbakar

The cost of that medicine was 400 dollars.

dan pasien akan sulit menelannya

The second option was a pill.

karena akan terasa seperti mau muntah

It's effect much faster,

dan anggota keluarga akan sulit untuk melihatnya.

much easier for patients to swallow.

The cost of this was 4,000 dollars.

Harga obatnya 400 dolar.

Pilihan kedua adalah pil.

Neither were covered by insurance.

Efeknya lebih cepat,

dan lebih mudah ditelan oleh pasien.

Our health care system policies and regulations

Harga pil ini 4,000 dolar.

are intended to protect and support us.

What patient scenarios and experiences are yet to be designed,

Keduanya tidak ditanggung asuransi.

Peraturan dan ketentuan sistem kesehatan kita

what systems need to be revisited?

Because at this moment,

there was a lot here that could use a redesign.

dibuat untuk melindungi kita.

We were so close to bringing her peace.

Skenario pasien seperti apa lagi yang belum didesain,

Her dying was complicated enough.

How difficult does the system need to be

sistem apa yang harus dikaji ulang?

in order to give a patient a peaceful death?

Karena di titik ini,

ada banyak hal yang dapat diubah.

Kami sudah hampir memberinya ketenangan.

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

Kematiannya sudah cukup rumit.

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

Harus seberapa sulitkah sistemnya

She said,

agar pasien baru dapat meninggal dengan tenang?

"That's crazy. Are you kidding me?

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

Perbedaan harganya memang mengejutkan,

(Laughter)

tetapi keputusannya ada di tangan ibu kami.

The night before her death,

Dia bilang,

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

“Ini gila. Apa kalian bercanda?

Saya akan ambil yang 400 dolar. Lagipula saya akan pergi juga.”

We made a beautiful feast

(Tertawaan)

of roast chicken, colorful salad,

strawberry shortcake, sparkling wine.

Di malam sebelum dia pergi,

We made a playlist of her favorite tunes.

Kami mengadakan pesta makan malam di rumahnya sesuai permintaannya.

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

Kami membuat pesta yang indah

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

dengan ayam panggang, salad warna-warni,

kue stroberi, anggur soda.

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

Kami membuat daftar lagu-lagu favoritnya.

Daftarnya berisi lagu Bee Gees, Dusty Springfield dan Elvis.

The morning of her last day,

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

Kami bercerita, tertawa, ibu kami bersulang.

to help us through the process.

Dia sangat bahagia, wajahnya berseri-seri sepanjang malam.

As preparations were underway,

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

Di pagi hari terakhirnya,

Every time I saw her,

seorang asisten perawatan akhir datang ke rumah kami

her eyes were bright

and her mouth was smiling

untuk membantu kami dengan prosesnya.

and she just kept giving me a thumbs up

Selagi prosedurnya disiapkan,

because she wanted us to feel brave.

Saya diam-diam melihat ibu saya untuk melihat kondisinya.

Setiap saya melihatnya,

We learned there were three medications in total.

matanya berseri-seri

dan mulutnya tersenyum

The first was to slow down her heart rate.

dan dia terus memberi jempolnya

karena dia mau kami merasa berani.

The second was for anti-nausea

and the third was her final medication.

Kami diberitahu bahwa ada tiga obat yang harus diminum.

The assistant,

before he handed her the medication, said

Obat pertama berfungsi untuk memperlambat detak jantungnya.

that by law, she had to declare out loud

Obat kedua adalah obat anti-mual

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

dan obat ketiga adalah obat terakhir.

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

Asistennya,

sebelum menyerahkan obatnya, berkata

she needed to do it for herself.

kalau sesuai hukum, ibu saya harus menyatakan

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

bahwa ini adalah keputusan dia untuk tidur selamanya.

My mom took the cup with two hands

Sesuai hukum, kami tidak boleh membantu ibu kami meminum obatnya,

and pounded it back like a shot of whiskey.

dia harus melakukannya sendiri.

(Laughter)

Asistennya menyuruh ibu saya pelan-pelan karena tenggorokannya akan sakit.

She looked at my dad and smiled,

closed her eyes.

Ibu saya mengangkat cangkirnya dengan dua tangan

And in 45 minutes she was gone.

dan meneguknya seperti secangkir wiski.

(Tertawaan)

Dia menatap ayah kami dan tersenyum,

I know the experience that we had is not common.

lalu menutup matanya.

For many people,

Dan 45 menit kemudian dia sudah pergi.

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

For some, death is full of uncertainty

Saya tahu pengalaman kita berbeda.

and can often be a waiting game.

Banyak orang

Watching our mom deteriorate wasn't easy

yang tidak punya kesempatan untuk berpamitan seperti kami.

and neither was caring for her.

Bagi beberapa orang, kematian itu tidak pasti

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

dan bisa seperti penantian.

That involved the expected tubes, needles, bed pans

Melihat kondisi ibu kami memburuk tidaklah mudah

and fluorescent lights.

dan merawatnya juga tidak mudah.

Caring for her was possible

Banyak hal dari pengalaman ini yang tidak indah.

because my sister Nancy took on the difficulty

of moving mom into her house,

Yang berkaitan dengan tabung, jarum, pispot

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

dan lampu pendar.

In an odd way, there was a lot of comfort

Kami berhasil merawatnya

karena saudara saya Nancy mengambil tugas berat

because we were figuring out this whole mess together.

memindahkan ibu kami ke rumahnya,

dan saudara saya Jenny adalah perawat yang membantu rasa sakitnya sampai akhir.

I can't imagine what it would have been like

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

Ada banyak kenyamanan yang aneh

How long and how painful would it have been?

karena kami mencari solusi semua ini bersama-sama.

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

Saya tidak bisa membayangkan bagaimana jika

Ibu saya tinggal di tempat di mana hukum ini tidak ada.

And what that means for actual legislation is unknown,

but what is clear

Akan seberapa lama dia menderita?

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

Tahun ini, 30 negara bagian AS mempertimbangkan hukum ini.

All over the world,

there are many cultures and families

Dan artinya untuk hukum masih tidak jelas.

who practice their own rituals of death.

Tetapi yang jelas adalah

These rituals are expressions

banyak orang yang tak akan punya suara.

based on their unique situations and environments.

Di seluruh dunia,

ada banyak budaya dan keluarga

yang memiliki ritual kematian mereka sendiri.

If you could design your own death,

Ritual ini adalah ekspresi

what would the experience be like,

and how would you want it to feel?

berdasarkan situasi dan lingkungan mereka.

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

Jika Anda bisa mendesain kematian Anda sendiri,

I'm a brand designer

akan seperti apa prosesnya,

that creates experiences by connecting with human emotion.

dan Anda mau merasa seperti apa?

What I know from my mom's experience

Saya bukan seorang ahli kesehatan ataupun penemu sains.

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

By sharing her story with friends and strangers,

Saya adalah seorang desainer merk

yang menciptakan pengalaman dengan menghubungkan perasaan orang.

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

Yang saya dapat dari pengalaman ibu saya

By having the conversation,

adalah cara untuk bicara tentang kematian.

it helps us to perhaps reframe or even rebrand death

Dengan membagikan ceritanya ke teman-teman dan orang asing,

from feeling scary or desolate or bleak

Saya belajar bahwa banyak yang penasaran tentang hal ini.

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

Dengan berdiskusi,

hal ini membantu kita melihat kematian dari sisi lain

My mom was born a fighter

dari perasaan takut atau sedih atau suram

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

menjadi jujur, mulia dan berani.

Today, she would have turned 69 years old

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

Ibu saya dilahirkan sebagai pejuang

dan dia menjadi desainer di akhir hidupnya.

Death is a universal human experience.

Hari ini, dia harusnya sudah berumur 69 tahun

What I've shared with you

dan untuk ulang tahunnya dia meminta saya membagikan ceritanya.

is more than a conversation between myself and my family.

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

Kematian adalah proses hidup yang umum.

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

Apa yang saya bagikan

lebih dari sekedar percakapan antara saya dan keluarga saya.

together we all have a say

in creating beautiful experiences from the very beginning,

Ini adalah percakapan antara kita semua.

but more importantly, at the end.

Pasien, dokter, ahli kesehatan, pembuat kebijakan, anggota keluarga,

Thank you.

(Applause)

kita sama-sama memiliki suara

untuk menciptakan pengalaman yang indah sejak awal,

tetapi yang lebih penting, pada akhirnya.

Terima kasih.

(Tepuk tangan)