[Music]
[Applause]
[Music]
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 a 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 or in feud 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 going up with her 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
grand grand babies grow up into
teenagers her world was filled with
beautiful experiences and a lot of color
but she never talked about the shades of
grey 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 of 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 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 4 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 to
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 her
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 in classic
Warren Beatty movies sometimes she’d
asked me for a mood board of beautiful
images of Mount Rainier so she could
look forward to her her 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 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
doll 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
that 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’s 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 vertebra
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 sign 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 Ian
colleges to hesitate on death of 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 its 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 the second option was
a pill its effect much faster much
easier for patients to swallow the cost
of this was $4,000 and either recovered
by insurance our healthcare system
policies and regulations are intended to
protect and support us what patients
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 piece
her dying was complicated enough how
difficult
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
one I’m leaving anyway
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
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 and
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
she looked at my dad and smiled closed
her eyes and at 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 her 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 bedpans 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 thirty 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 healthcare
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
reimagining 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 a 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]
[Applause]
[Music]
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 a 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 or in feud 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 going up with her 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
grand grand babies grow up into
teenagers her world was filled with
beautiful experiences and a lot of color
but she never talked about the shades of
grey 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 of 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 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 4 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 to
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 her
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 in classic
Warren Beatty movies sometimes she’d
asked me for a mood board of beautiful
images of Mount Rainier so she could
look forward to her her 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 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
doll 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
that 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’s 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 vertebra
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 sign 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 Ian
colleges to hesitate on death of 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 its 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 the second option was
a pill its effect much faster much
easier for patients to swallow the cost
of this was $4,000 and either recovered
by insurance our healthcare system
policies and regulations are intended to
protect and support us what patients
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 piece
her dying was complicated enough how
difficult
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
one I’m leaving anyway
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
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 and
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
she looked at my dad and smiled closed
her eyes and at 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 her 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 bedpans 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 thirty 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 healthcare
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
reimagining 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 a 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]
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