Transcriber: Tanya Cushman Reviewer: Peter van de Ven
What's the most important conversation in America?
The one we aren't having.
It's not about sex,
it's not about money -
we talk about those all the time -
It's about dying;
or more to the point,
it's about how we want to live at the end of our lives.
It's about the care we want,
and the care we don't want to have
and who is going to decide.
Is it going to be a harried EMT?
Is it going to be a doctor you've never met?
Is it going to be a nurse in the ICU?
Or will it be you, deciding for yourselves
and for the people you love?
I know what you're thinking:
Can't we talk about something more pleasant?
Well, in the last hundred years,
we've added 30 years to the average American lifespan,
30 years.
That's the good news.
The bad news is that we are all still mortal.
In fact, my favorite line on this comes from the satirical magazine "The Onion,"
when they said,
"Death rate holds steady at 100%."
(Laughter)
I hope I haven't ruined your afternoon.
The result of this wonderful technology
has also meant that death is no longer what we used to think of as natural.
Many of the people we love are not dying in the way they would choose
and many survivors are left depressed,
guilty,
and uncertain about whether they have done the right thing.
But we can change that,
we can change that with something pretty simple:
You do not need an app for this;
you do not need a credit card;
you do not need an 800 number;
what you need is a conversation.
You need to sit down
at the kitchen table
with the people you love
and talk about your wishes and their wishes
for end-of-life care.
Now as some of you may know, I am a recovering journalist.
In all of my years writing a column,
I talked to a lot of people and heard a lot of stories,
but I have never seen anything like this.
I tell people that I'm trying to encourage end-of-life conversations,
and there's half a beat,
and then out comes a story.
And it's a story of a good death
or of a hard death.
I remember a young daughter
who told me that she still regrets
her mother's last week of life was spent in chemotherapy
because they never had the conversation.
I remember a wife telling me about her husband,
and how after his death,
she watched EMTs pounding on his chest
because they could not find his advanced directive.
I remember a son who told me
with deep regret
how he shut down his father's attempt to have this conversation;
when his father tried to talk to him,
he brushed him off, saying,
"Oh, Dad, you're not dying."
And I remember a young husband
who talked to me about his wife's death from a tragic accident
and the decisions he had to make,
and how he didn't know what she wanted
because they always thought it was too soon.
It's always too soon,
until it's too late.
So, I have my story, too.
Around the time I turned 60,
I went from being a working mother to being a working daughter -
a lot of you will know what I mean.
My mother began a long, slow decline.
Now, my mom and I had talked about everything.
I once wrote about her saying
that she was somebody who would listen to me talk about my problems
until I was bored with them.
But the most we had ever talked about her end-of-life wishes
was when she would see somebody,
and she would say, "If I'm ever like that,
pull the plug."
But of course, when the time came
there was no plug to pull;
there rarely is.
Toward the end of her life,
she could no longer decide what she wanted to have for lunch,
let alone what she wanted to have for health care.
And those decisions fell to me.
I was surprised;
I was in many ways blindsided by having to make those decisions.
I still remember one day,
when I was on deadline,
and I got a phone call from her doctor at the long-term care facility,
and he said, "Your mom has another bout of pneumonia.
Do you want her to have antibiotics?"
And I froze,
and I thought,
"What's he asking me?
Do I want my mother to live or die?
Could I call you back?
Could I have another minute?"
Many months and many decisions after that,
I began to realize how deeply I wished
I had heard my mother's voice in my ear
telling me what she would have wanted.
We started the Conversation Project
to make it easier
for you and for your families.
We do want people to come to that kitchen table
to have that conversation before there is a crisis.
We believe, and our mission, really,
is to have people's wishes expressed and respected.
Let me share with you some statistics:
70% of Americans say that they want to die at home,
and 70% of Americans are dying at hospitals and institutions.
80% of Americans say they want to talk to their doctors about it,
but in Massachusetts, only 17% are,
and in California, only 7% have talked to their doctors,
which is virtually nobody.
Now, 90% of Americans in a survey that we did
said that they think it's important to have these conversations.
90% of Americans do not agree on anything;
they do not even agree on the National Anthem.
But they agree about this.
But at the same time,
only 30% have had those conversations.
So, we can change that.
We can truly change that.
How can we change it?
Well, we have a few tools to begin with.
First of all, we have a conversation starter kit
that will, in fact, make it easier for you to start these conversations.
This kit is not a scary advance-care checklist.
There are not enough checklists in the world to cover every medical event.
You do not need a medical degree to look at our conversation starter kit.
It's about values.
It's about what matters to you,
not what's the matter with you,
but what matters to you.
We ask questions like this:
We ask, "When you think about the end of life,
what does matter to you?"
We ask, "Who would you want to make decisions for you
if you could not make them for yourself?"
We ask, "Where would you want to be? At home? In a hospital?"
And of course we ask, "Do you want everything, every extreme measure,
the whole enchilada,
another week, day, month of life?
Or would there come a time
when you would want comfort care?"
So, we believe that we can change this.
How do we change this?
How do we close that gap, that I described,
between the 90 and the 60%?
Aside from our conversation starter kit,
we are also talking to people who tell stories in public,
the big storytellers on the big screen and on the little screen,
those screenwriters,
we need them to help us change the cultural norm
from not having these conversations to having them.
And so we have talked to the Writers Guild in Hollywood,
and guess what?
The screenwriters and the producers, they have their own stories,
and we are asking them to share ours,
to share more reasonable stories,
not some of the fantastic stories that you see on these screens,
but the real ones.
We are also bringing the Conversation Project
to people where they live,
where they work,
where they pray,
and, yes, where they eat.
This winter we're going to hold a national dinner party.
Our national dinner party where we hope all of you will join us,
that you will indeed invite people to your own tables
to sit around and, yes, talk about death over dinner.
We have, as well, celebrity chefs who have joined us,
and they have shared with us,
in an e-cookbook,
their stories
and their comfort food,
their recipes.
And we know that all of you
can share them and join us for comfort food and conversations.
I am not suggesting that these conversations
are ever truly, truly easy,
because they involve deep emotions,
loss,
love,
but we can make them a lot easier than we are now.
We can - and we have seen this happen again and again -
we know that people who were very afraid of starting these conversations
have gotten some help.
We know older parents have been able to say to their children,
"I may need you to not only help me,
but I want to make sure you're all on the same page when I need you."
We know that adult children have turned to their parents and said,
"You know what, Mom, I know you don't want to talk about this,
but there may come a time when I have to make decisions for you,
and I will need your help."
What parent can refuse a request for help?
And we have learned from others,
like a young man who told me
that he never thought he could have this conversation with his own father,
but when he did,
it started one of the most intimate and real conversations about love
that they had ever had,
and about life as well as about death.
So, I'm going to ask you a few things.
I'm going to hope that all of you
will think about how you want to live at the end of your lives.
Think about:
Who do you want to make decisions for you,
if you can't make them for yourself?
Email that person - you may take out your cellphone.
Not only email that person,
call that person,
tap him on the shoulder and say,
"You know what? It's time for us to have a conversation."
I promise you
that these conversations will be among the most important parts
of the legacy that we can leave each other.
And so, I'll leave you with two questions:
Have you had the conversation?
Will you have the conversation?
Thank you.
(Applause)