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

Transcriber:

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?

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.

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.

(Laughter)

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.

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.

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."

(Laughter)

"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.

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.

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.

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.

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.

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.

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."

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.

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."

(Laughter)

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.

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.

(Laughter)

She looked at my dad and smiled,

closed her eyes.

And in 45 minutes she was gone.

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.

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.

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.

Thank you.

(Applause)