My mothers 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)