TEDMED 2013

Amanda Bennett: We need a heroic narrative for death

Filmed:

Amanda Bennett and her husband were passionate and full of life all throughout their lives together -- and up until the final days, too. Bennett gives a sweet yet powerful talk on why, for the loved ones of the dying, having hope for a happy ending shouldn't warrant a diagnosis of "denial." She calls for a more heroic narrative for death -- to match the ones we have in life.

- Journalist
In "The Cost of Hope," Pulitzer Prize winning journalist Amanda Bennett brings an investigative angle to the conversation about end-of-life care. Full bio

So I'd like you to come back with me
00:12
just for a few minutes
00:14
to a dark night in China,
00:16
the night I met my husband.
00:19
It was a city so long ago that it was still called
00:22
Peking.
00:25
So I went to a party.
00:28
I sat down next to a stout, middle-aged man
00:30
with owl glasses and a bow tie,
00:34
and he turned out to be a Fulbright scholar,
00:37
there in China specifically to study
00:40
Sino-Soviet relations.
00:43
What a gift it was to the eager,
00:46
young foreign correspondent that I was then.
00:48
I'd pump him for information,
00:51
I'm mentally scribbling notes
00:53
for the stories I plan to write.
00:54
I talk to him for hours.
00:57
Only months later,
00:59
I discover who he really was.
01:03
He was the China representative
01:05
for the American Soybean Association.
01:08
"I don't understand. Soybeans?
01:12
You told me you were a Fulbright scholar."
01:15
"Well, how long would you have talked to me
01:18
if I told you we're in soybeans?"
01:20
(Laughter)
01:22
I said, "You jerk."
01:25
Only jerk wasn't the word I used.
01:28
I said, "You could've gotten me fired."
01:32
And he said, "Let's get married."
01:36
(Laughter)
01:39
"Travel the world and have lots of kids."
01:41
So we did.
01:43
(Laughter)
01:46
(Applause)
01:48
And what an alive man Terence Bryan Foley
01:53
turned out to be.
01:57
He was a Chinese scholar
01:58
who later, in his 60s,
02:00
got a Ph.D. in Chinese history.
02:02
He spoke six languages,
02:04
he played 15 musical instruments,
02:07
he was a licensed pilot,
02:09
he had once been a San Francisco cable car operator,
02:11
he was an expert in swine nutrition,
02:14
dairy cattle, Dixieland jazz, film noir,
02:17
and we did travel the country, and the world,
02:21
and we did have a lot of kids.
02:25
We followed my job, and it seemed like
02:27
there was nothing that we couldn't do.
02:29
So when we found the cancer,
02:32
it doesn't seem strange to us at all
02:36
that without saying a word to each other,
02:39
we believed that,
02:41
if we were smart enough
02:44
and strong enough and brave enough,
02:46
and we worked hard enough,
02:50
we could keep him from dying ever.
02:53
And for years, it seemed like we were succeeding.
02:58
The surgeon emerged from the surgery.
03:02
What'd he say? He said what surgeons always say:
03:04
"We got it all."
03:07
Then there was a setback when the pathologists
03:09
looked at the kidney cancer closely.
03:12
It turned out to be a rare,
03:14
exceedingly aggressive type,
03:16
with a diagnosis that was almost universally fatal
03:18
in several weeks at most.
03:21
And yet, he did not die.
03:23
Mysteriously, he lived on.
03:27
He coached Little League for our son.
03:30
He built a playhouse for our daughter.
03:32
And meanwhile, I'm burying myself in the Internet
03:35
looking for specialists.
03:38
I'm looking for a cure.
03:40
So a year goes by
03:42
before the cancer, as cancers do,
03:44
reappears,
03:48
and with it comes another death sentence,
03:50
this time nine months.
03:52
So we try another treatment, aggressive, nasty.
03:54
It makes him so sick, he has to quit it,
03:58
yet still he lives on.
04:00
Then another year goes by.
04:03
Two years go by.
04:05
More specialists.
04:06
We take the kids to Italy.
04:08
We take the kids to Australia.
04:09
And then more years pass,
04:12
and the cancer begins to grow.
04:15
This time, there's new treatments on the horizon.
04:17
They're exotic. They're experimental.
04:20
They're going to attack the cancer in new ways.
04:22
So he enters a clinical trial, and it works.
04:25
The cancer begins to shrink,
04:29
and for the third time,
04:31
we've dodged death.
04:33
So now I ask you,
04:37
how do I feel
04:40
when the time finally comes
04:42
and there's another dark night,
04:45
sometime between midnight and 2 a.m.?
04:47
This time it's on the intensive care ward
04:50
when a twentysomething resident
04:53
that I've never met before
04:55
tells me that Terence is dying,
04:57
perhaps tonight.
04:59
So what do I say when he says,
05:02
"What do you want me to do?"
05:04
There's another drug out there.
05:07
It's newer. It's more powerful.
05:09
He started it just two weeks ago.
05:11
Perhaps there's still hope ahead.
05:14
So what do I say?
05:17
I say, "Keep him alive if you can."
05:19
And Terence died six days later.
05:22
So we fought, we struggled, we triumphed.
05:25
It was an exhilarating fight,
05:30
and I'd repeat the fight today
05:31
without a moment's hesitation.
05:33
We fought together, we lived together.
05:36
It turned what could have been
05:39
seven of the grimmest years of our life
05:41
into seven of the most glorious.
05:43
It was also an expensive fight.
05:47
It was the kind of fight and the kind of choices
05:50
that everyone here agrees
05:52
pump up the cost of end-of-life care,
05:53
and of healthcare for all of us.
05:56
And for me, for us,
05:58
we pushed the fight right over the edge,
06:01
and I never got the chance to say to him
06:03
what I say to him now almost every day:
06:07
"Hey, buddy, it was a hell of a ride."
06:10
We never got the chance to say goodbye.
06:13
We never thought it was the end.
06:16
We always had hope.
06:18
So what do we make of all of this?
06:23
Being a journalist, after Terence died,
06:27
I wrote a book, "The Cost Of Hope."
06:30
I wrote it because I wanted to know
06:34
why I did what I did,
06:36
why he did what he did,
06:38
why everyone around us did what they did.
06:39
And what did I discover?
06:42
Well, one of the things I discovered is that
06:44
experts think that one answer to
06:45
what I did at the end was a piece of paper,
06:48
the advance directive,
06:51
to help families get past the seemingly irrational choices.
06:53
Yet I had that piece of paper.
06:57
We both did.
07:02
And they were readily available.
07:04
I had them right at hand.
07:05
Both of them said the same thing:
07:07
Do nothing if there is no further hope.
07:10
I knew Terence's wishes
07:14
as clearly and as surely as I knew my own.
07:16
Yet we never got to no further hope.
07:20
Even with that clear-cut paper in our hands,
07:25
we just kept redefining hope.
07:28
I believed I could keep him from dying,
07:31
and I'd be embarrassed to say that if I hadn't seen
07:37
so many people and have talked to so many people
07:39
who have felt exactly the same way.
07:42
Right up until days before his death,
07:44
I felt strongly
07:48
and powerfully, and, you might say, irrationally,
07:52
that I could keep him from dying ever.
07:56
Now, what do the experts call this?
08:01
They say it's denial.
08:04
It's a strong word, isn't it?
08:06
Yet I will tell you that denial
08:09
isn't even close to a strong enough word
08:11
to describe what those of us
08:16
facing the death of our loved ones go through.
08:19
And I hear the medical professionals say,
08:22
"Well, we'd like to do such-and-such,
08:25
but the family's in denial.
08:27
The family won't listen to reason.
08:29
They're in denial.
08:31
How can they insist on this treatment at the end?
08:34
It's so clear, yet they're in denial."
08:36
Now, I think this maybe isn't
08:39
a very useful way of thinking.
08:41
It's not just families either.
08:44
The medical professionals too,
08:46
you out there, you're in denial too.
08:49
You want to help. You want to fix.
08:52
You want to do.
08:55
You've succeeded in everything you've done,
08:57
and having a patient die,
08:59
well, that must feel like failure.
09:01
I saw it firsthand.
09:05
Just days before Terence died,
09:07
his oncologist said,
09:10
"Tell Terence that better days are just ahead."
09:12
Days before he died.
09:15
Yet Ira Byock,
09:17
the director of palliative medicine at Dartmouth
09:19
said, "You know, the best doctor in the world
09:21
has never succeeded in making anyone immortal."
09:24
So what the experts call "denial," I call "hope,"
09:29
and I'd like to borrow a phrase
09:35
from my friends in software design.
09:37
You just redefine denial and hope,
09:41
and it becomes a feature of being human.
09:44
It's not a bug.
09:47
It's a feature.
09:49
(Laughter)
09:52
So we need to think more constructively
09:55
about this very common, very profound
09:58
and very powerful human emotion.
10:03
It's part of the human condition,
10:07
and yet our system and our thinking
10:09
isn't built to accommodate it.
10:11
So Terence told me a story on that long-ago night,
10:15
and I believed it.
10:18
Maybe I wanted to believe it.
10:20
And during Terence's illness, I, we,
10:23
we wanted to believe the story
10:28
of our fight together too.
10:30
Giving up the fight -- for that's how it felt,
10:32
it felt like giving up --
10:36
meant giving up not only his life
10:38
but also our story,
10:41
our story of us as fighters,
10:44
the story of us as invincible,
10:47
and for the doctors, the story of themselves
10:50
as healers.
10:52
So what do we need?
10:54
Maybe we don't need a new piece of paper.
10:57
Maybe we need a new story,
11:00
not a story about giving up the fight
11:03
or of hopelessness,
11:07
but rather a story of victory and triumph,
11:09
of a valiant battle and, eventually,
11:13
a graceful retreat,
11:17
a story that acknowledges
11:20
that not even the greatest general defeats every foe,
11:23
that no doctor has ever succeeded
11:27
in making anyone immortal,
11:29
and that no wife, no matter how hard she tried,
11:32
has ever stopped even the bravest,
11:38
wittiest and most maddeningly lovable husband
11:42
from dying when it was his time to go.
11:46
People did mention hospice,
11:51
but I wouldn't listen.
11:53
Hospice was for people who were dying,
11:56
and Terence wasn't dying.
12:00
As a result, he spent just four days in hospice,
12:03
which I'm sure, as you all know,
12:06
is a pretty typical outcome,
12:08
and we never said goodbye
12:10
because we were unprepared for the end.
12:11
We have a noble path to curing the disease,
12:14
patients and doctors alike,
12:18
but there doesn't seem to be
12:20
a noble path to dying.
12:23
Dying is seen as failing,
12:25
and we had a heroic narrative
12:28
for fighting together,
12:31
but we didn't have a heroic narrative for letting go.
12:33
So maybe we need a narrative
12:38
for acknowledging the end, and for saying goodbye,
12:42
and maybe our new story will be
12:46
about a hero's fight, and a hero's goodbye.
12:48
Terence loved poetry,
12:53
and the Greek poet Constantine Cavafy
12:55
is one of my favorite poets.
12:58
So I'll give you a couple lines from him.
13:01
This is a poem about Mark Antony.
13:04
You know Mark Antony, the conquering hero,
13:06
Cleopatra's guy?
13:09
Actually, one of Cleopatra's guys.
13:10
And he's been a pretty good general.
13:13
He's won all the fights,
13:15
he's eluded all the people that are out to get him,
13:17
and yet this time, finally,
13:19
he's come to the city of Alexandria
13:21
and realized he's lost.
13:23
The people are leaving. They're playing instruments.
13:24
They're singing.
13:26
And suddenly he knows he's been defeated.
13:27
And he suddenly knows
13:30
he's been deserted by the gods,
13:32
and it's time to let go.
13:35
And the poet tells him what to do.
13:36
He tells him how to say a noble goodbye,
13:38
a goodbye that's fit for a hero.
13:42
"As if long-prepared,
13:46
as if courageous,
13:48
as it becomes you
13:51
who were worthy of such a city,
13:54
approach the window with a firm step,
13:56
and with emotion,
13:58
but not with the entreaties
14:01
or the complaints of a coward,
14:03
as a last enjoyment,
14:06
listen to the sounds,
14:08
the exquisite instruments of the musical troops,
14:10
and bid her farewell,
14:13
the Alexandria you are losing."
14:15
That's a goodbye for a man who was larger than life,
14:20
a goodbye for a man
14:23
for whom anything,
14:25
well, almost anything,
14:27
was possible,
14:31
a goodbye for a man who kept hope alive.
14:32
And isn't that what we're missing?
14:36
How can we learn that people's decisions
14:38
about their loved ones
14:40
are often based strongly, powerfully,
14:41
many times irrationally,
14:45
on the slimmest of hopes?
14:48
The overwhelming presence of hope
14:50
isn't denial.
14:53
It's part of our DNA as humans,
14:55
and maybe it's time our healthcare system --
14:58
doctors, patients, insurance companies, us,
15:00
started accounting for the power of that hope.
15:05
Hope isn't a bug.
15:09
It's a feature.
15:11
Thank you.
15:13
(Applause)
15:16

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About the Speaker:

Amanda Bennett - Journalist
In "The Cost of Hope," Pulitzer Prize winning journalist Amanda Bennett brings an investigative angle to the conversation about end-of-life care.

Why you should listen

Amanda Bennett is the Executive Editor of Projects and Investigations for Bloomberg News. Previously she served for three years as the Managing Editor of projects for The Oregonian in Portland and was a reporter for The Wall Street Journal for more than 20 years.

In 1997 Bennett shared the Pulitzer Prize for national reporting for a Wall Street Journal investigation on the struggle against AIDS, and in 2001 received a second Pulitzer Prize, for public service, as the lead of a team at The Oregonian. In 2010 Bennett was elected as co-Chairman of the Pulitzer Prize Board.

Bennett has written six books. Her most recent book, The Cost of Hope, is part-memoir, part-investigative report, about her seven-year struggle within the American healthcare system to save her husband from cancer.