15:47
TEDMED 2014

Leana Wen: What your doctor won’t disclose

Filmed:

Wouldn’t you want to know if your doctor was a paid spokesman for a drug company? Or held personal beliefs incompatible with the treatment you want? Right now, in the US at least, your doctor simply doesn’t have to tell you about that. And when physician Leana Wen asked her fellow doctors to open up, the reaction she got was … unsettling.

- Emergency physician, public health advocate
Dr. Leana Wen is Baltimore City's Health Commissioner. Full bio

They told me that I'm a traitor
to my own profession,
00:13
that I should be fired,
00:17
have my medical license taken away,
00:19
that I should go back to my own country.
00:21
My email got hacked.
00:26
In a discussion forum for other doctors,
00:28
someone took credit
for "Twitter-bombing" my account.
00:31
Now, I didn't know if this
was a good or bad thing,
00:35
but then came the response:
00:38
"Too bad it wasn't a real bomb."
00:40
I never thought that I would do something
00:44
that would provoke this level of anger
among other doctors.
00:46
Becoming a doctor was my dream.
00:50
I grew up in China,
00:52
and my earliest memories
are of being rushed to the hospital
00:53
because I had such bad asthma
that I was there nearly every week.
00:57
I had this one doctor, Dr. Sam,
who always took care of me.
01:01
She was about the same age as my mother.
01:04
She had this wild, curly hair,
01:06
and she always wore
these bright yellow flowery dresses.
01:08
She was one of those doctors who,
01:12
if you fell and you broke your arm,
01:13
she would ask you why you weren't laughing
01:16
because it's your humerus. Get it?
01:18
See, you'd groan,
01:22
but she'd always make you feel better
after having seen her.
01:24
Well, we all have that childhood hero
01:27
that we want to grow up
to be just like, right?
01:29
Well, I wanted to be just like Dr. Sam.
01:32
When I was eight,
my parents and I moved to the U.S.,
01:35
and ours became
the typical immigrant narrative.
01:39
My parents cleaned hotel rooms
and washed dishes and pumped gas
01:41
so that I could pursue my dream.
01:46
Well, eventually I learned enough English,
01:49
and my parents were so happy
01:51
the day that I got into medical school
and took my oath of healing and service.
01:53
But then one day, everything changed.
01:58
My mother called me to tell me
that she wasn't feeling well,
02:01
she had a cough that wouldn't go away,
she was short of breath and tired.
02:04
Well, I knew that my mother was someone
who never complained about anything.
02:07
For her to tell me
that something was the matter,
02:11
I knew something had to be really wrong.
02:14
And it was:
02:16
We found out that she had
stage IV breast cancer,
02:17
cancer that by then had spread
to her lungs, her bones, and her brain.
02:20
My mother was brave,
though, and she had hope.
02:26
She went through surgery and radiation,
02:28
and was on her third round of chemotherapy
02:30
when she lost her address book.
02:32
She tried to look up her oncologist's
phone number on the Internet
02:34
and she found it,
but she found something else too.
02:37
On several websites,
02:40
he was listed as a highly paid
speaker to a drug company,
02:41
and in fact often spoke on behalf
02:45
of the same chemo regimen
that he had prescribed her.
02:47
She called me in a panic,
02:50
and I didn't know what to believe.
02:52
Maybe this was the right
chemo regimen for her,
02:54
but maybe it wasn't.
02:56
It made her scared and it made her doubt.
02:58
When it comes to medicine,
03:01
having that trust is a must,
03:03
and when that trust is gone,
then all that's left is fear.
03:06
There's another side to this fear.
03:11
As a medical student, I was taking care
of this 19-year-old
03:13
who was biking back to his dorm
03:17
when he got struck and hit,
03:18
run over by an SUV.
03:20
He had seven broken ribs,
03:23
shattered hip bones,
03:24
and he was bleeding inside
his belly and inside his brain.
03:26
Now, imagine being his parents
03:29
who flew in from Seattle,
2,000 miles away,
03:31
to find their son in a coma.
03:33
I mean, you'd want to find out
what's going on with him, right?
03:35
They asked to attend our bedside rounds
03:38
where we discussed
his condition and his plan,
03:40
which I thought was a reasonable request,
03:42
and also would give us
a chance to show them
03:44
how much we were trying
and how much we cared.
03:46
The head doctor, though, said no.
03:49
He gave all kinds of reasons.
03:52
Maybe they'll get in the nurse's way.
03:53
Maybe they'll stop students
from asking questions.
03:55
He even said,
03:59
"What if they see mistakes and sue us?"
04:01
What I saw behind every excuse
was deep fear,
04:05
and what I learned
was that to become a doctor,
04:08
we have to put on our white coats,
04:11
put up a wall, and hide behind it.
04:13
There's a hidden epidemic in medicine.
04:17
Of course, patients are scared
when they come to the doctor.
04:20
Imagine you wake up
with this terrible bellyache,
04:23
you go to the hospital,
04:25
you're lying in this strange place,
you're on this hospital gurney,
04:26
you're wearing this flimsy gown,
04:29
strangers are coming
to poke and prod at you.
04:31
You don't know what's going to happen.
04:33
You don't even know if you're going to get
the blanket you asked for 30 minutes ago.
04:35
But it's not just patients who are scared;
04:39
doctors are scared too.
04:41
We're scared of patients
finding out who we are
04:43
and what medicine is all about.
04:46
And so what do we do?
04:48
We put on our white coats
and we hide behind them.
04:50
Of course, the more we hide,
04:53
the more people want to know
what it is that we're hiding.
04:54
The more fear then spirals
into mistrust and poor medical care.
04:57
We don't just have a fear of sickness,
05:01
we have a sickness of fear.
05:03
Can we bridge this disconnect
05:07
between what patients need
and what doctors do?
05:09
Can we overcome the sickness of fear?
05:13
Let me ask you differently:
05:15
If hiding isn't the answer,
what if we did the opposite?
05:17
What if doctors were to become
totally transparent with their patients?
05:21
Last fall, I conducted
a research study to find out
05:26
what it is that people want
to know about their healthcare.
05:29
I didn't just want to study
patients in a hospital,
05:32
but everyday people.
05:34
So my two medical students,
Suhavi Tucker and Laura Johns,
05:35
literally took their research
to the streets.
05:39
They went to banks,
coffee shops, senior centers,
05:41
Chinese restaurants and train stations.
05:45
What did they find?
05:49
Well, when we asked people,
05:50
"What do you want to know
about your healthcare?"
05:51
people responded with what they want
to know about their doctors,
05:54
because people understand health care
05:58
to be the individual interaction
between them and their doctors.
05:59
When we asked, "What do you
want to know about your doctors?"
06:03
people gave three different answers.
06:06
Some want to know
that their doctor is competent
06:08
and certified to practice medicine.
06:11
Some want to be sure
that their doctor is unbiased
06:13
and is making decisions
based on evidence and science,
06:16
not on who pays them.
06:19
Surprisingly to us,
06:21
many people want to know
something else about their doctors.
06:23
Jonathan, a 28-year-old law student,
06:26
says he wants to find someone
who is comfortable with LGBTQ patients
06:29
and specializes in LGBT health.
06:34
Serena, a 32-year-old accountant,
06:36
says that it's important to her
for her doctor to share her values
06:38
when it comes to reproductive choice
and women's rights.
06:41
Frank, a 59-year-old
hardware store owner,
06:45
doesn't even like going to the doctor
06:47
and wants to find someone
who believes in prevention first,
06:50
but who is comfortable
with alternative treatments.
06:53
One after another,
our respondents told us
06:56
that that doctor-patient relationship
is a deeply intimate one —
06:59
that to show their doctors their bodies
07:02
and tell them their deepest secrets,
07:04
they want to first understand
their doctor's values.
07:06
Just because doctors
have to see every patient
07:09
doesn't mean that patients
have to see every doctor.
07:12
People want to know
about their doctors first
07:15
so that they can make an informed choice.
07:17
As a result of this, I formed a campaign,
07:20
Who's My Doctor?
07:22
that calls for total
transparency in medicine.
07:24
Participating doctors voluntarily disclose
07:27
on a public website
07:29
not just information
about where we went to medical school
07:30
and what specialty we're in,
07:33
but also our conflicts of interest.
07:35
We go beyond
the Government in the Sunshine Act
07:36
about drug company affiliations,
07:39
and we talk about how we're paid.
07:41
Incentives matter.
07:44
If you go to your doctor
because of back pain,
07:46
you might want to know he's getting paid
5,000 dollars to perform spine surgery
07:48
versus 25 dollars to refer you
to see a physical therapist,
07:52
or if he's getting paid the same thing
no matter what he recommends.
07:56
Then, we go one step further.
08:00
We add our values
when it comes to women's health,
08:03
LGBT health, alternative medicine,
08:05
preventive health,
and end-of-life decisions.
08:08
We pledge to our patients
that we are here to serve you,
08:11
so you have a right to know who we are.
08:14
We believe that transparency
can be the cure for fear.
08:17
I thought some doctors would sign on
and others wouldn't,
08:21
but I had no idea of the huge backlash
that would ensue.
08:24
Within one week of starting
Who's My Doctor?
08:29
Medscape's public forum
08:31
and several online doctors' communities
08:33
had thousands of posts about this topic.
08:35
Here are a few.
08:39
From a gastroenterologist in Portland:
08:40
"I devoted 12 years of my life
to being a slave.
08:42
I have loans and mortgages.
08:45
I depend on lunches from
drug companies to serve patients."
08:47
Well, times may be hard for everyone,
08:51
but try telling your patient
08:54
making 35,000 dollars a year
to serve a family of four
08:55
that you need the free lunch.
08:58
From an orthopedic surgeon in Charlotte:
09:02
"I find it an invasion of my privacy
to disclose where my income comes from.
09:05
My patients don't disclose
their incomes to me."
09:09
But your patients' sources of income
don't affect your health.
09:13
From a psychiatrist in New York City:
09:17
"Pretty soon we will have to disclose
whether we prefer cats to dogs,
09:19
what model of car we drive,
09:23
and what toilet paper we use."
09:24
Well, how you feel
about Toyotas or Cottonelle
09:27
won't affect your patients' health,
09:30
but your views
on a woman's right to choose
09:32
and preventive medicine
and end-of-life decisions just might.
09:34
And my favorite,
from a Kansas City cardiologist:
09:38
"More government-mandated stuff?
09:41
Dr. Wen needs to move
back to her own country."
09:44
Well, two pieces of good news.
09:48
First of all, this is meant to be
voluntary and not mandatory,
09:50
and second of all, I'm American
and I'm already here.
09:53
(Laughter) (Applause)
09:57
Within a month, my employers
were getting calls
10:05
asking for me to be fired.
10:08
I received mail
at my undisclosed home address
10:10
with threats to contact
the medical board to sanction me.
10:13
My friends and family urged me
to quit this campaign.
10:17
After the bomb threat, I was done.
10:21
But then I heard from patients.
10:24
Over social media, a TweetChat,
10:26
which I'd learned what that was by then,
10:29
generated 4.3 million impressions,
10:31
and thousands of people wrote
to encourage me to continue.
10:34
They wrote with things like,
10:38
"If doctors are doing something
they're that ashamed of,
10:40
they shouldn't be doing it."
10:43
"Elected officials have to disclose
campaign contributions.
10:46
Lawyers have to disclose
conflicts of interests.
10:49
Why shouldn't doctors?"
10:51
And finally, many people wrote and said,
10:53
"Let us patients decide
10:56
what's important
when we're choosing a doctor."
10:58
In our initial trial,
11:02
over 300 doctors have taken
the total transparency pledge.
11:03
What a crazy new idea, right?
11:08
But actually, this is not
that new of a concept at all.
11:10
Remember Dr. Sam, my doctor in China,
11:13
with the goofy jokes and the wild hair?
11:15
Well, she was my doctor,
11:18
but she was also our neighbor
11:19
who lived in the building
across the street.
11:21
I went to the same school as her daughter.
11:23
My parents and I trusted her
11:26
because we knew who she was
and what she stood for,
11:28
and she had no need to hide from us.
11:30
Just one generation ago,
this was the norm in the U.S. as well.
11:33
You knew that your family doctor
was the father of two teenage boys,
11:37
that he quit smoking a few years ago,
11:40
that he says he's a regular churchgoer,
11:42
but you see him twice a year:
once at Easter
11:44
and once when his mother-in-law
comes to town.
11:46
You knew what he was about,
11:50
and he had no need to hide from you.
11:51
But the sickness of fear has taken over,
11:54
and patients suffer the consequences.
11:57
I know this firsthand.
11:59
My mother fought
her cancer for eight years.
12:02
She was a planner,
12:05
and she thought a lot
about how she wanted to live
12:06
and how she wanted to die.
12:08
Not only did she sign advance directives,
12:10
she wrote a 12-page document
about how she had suffered enough,
12:13
how it was time for her to go.
12:16
One day, when I was a resident physician,
12:19
I got a call to say that she was
in the intensive care unit.
12:21
By the time I got there,
she was about to be intubated
12:25
and put on a breathing machine.
12:29
"But this is not what she wants,"
I said, "and we have documents."
12:31
The ICU doctor looked at me in the eye,
12:36
pointed at my then 16-year-old
sister, and said,
12:38
"Do you remember when you were that age?
12:43
How would you have liked to grow up
without your mother?"
12:45
Her oncologist was there too, and said,
12:49
"This is your mother.
12:52
Can you really face yourself
for the rest of your life
12:54
if you don't do everything for her?"
12:56
I knew my mother so well.
13:00
I understood what
her directives meant so well,
13:02
but I was a physician.
13:05
That was the single hardest
decision I ever made,
13:09
to let her die in peace,
13:13
and I carry those words
of those doctors with me
13:16
every single day.
13:19
We can bridge the disconnect
13:23
between what doctors do
and what patients need.
13:25
We can get there,
because we've been there before,
13:30
and we know that transparency
gets us to that trust.
13:32
Research has shown us
that openness also helps doctors,
13:35
that having open medical records,
13:38
being willing to talk
about medical errors,
13:39
will increase patient trust,
13:41
improve health outcomes,
13:43
and reduce malpractice.
13:45
That openness, that trust,
13:47
is only going to be more important
13:48
as we move from the infectious
to the behavioral model of disease.
13:50
Bacteria may not care so much
about trust and intimacy,
13:54
but for people to tackle
the hard lifestyle choices,
13:57
to address issues like smoking cessation,
14:01
blood-pressure management
and diabetes control,
14:03
well, that requires us to establish trust.
14:06
Here's what other transparent
doctors have said.
14:11
Brandon Combs, an internist in Denver:
14:13
"This has brought me
closer to my patients.
14:16
The type of relationship I've developed —
14:19
that's why I entered medicine."
14:22
Aaron Stupple, an internist in Denver:
14:26
"I tell my patients
that I am totally open with them.
14:28
I don't hide anything from them.
14:32
This is me. Now tell me about you.
14:34
We're in this together."
14:37
May Nguyen, a family physician in Houston:
14:39
"My colleagues are astounded
by what I'm doing.
14:41
They ask me how I could be so brave.
14:45
I said, I'm not being brave,
14:48
it's my job."
14:51
I leave you today with a final thought.
14:55
Being totally transparent is scary.
14:58
You feel naked, exposed and vulnerable,
15:01
but that vulnerability, that humility,
15:05
it can be an extraordinary benefit
to the practice of medicine.
15:08
When doctors are willing
to step off our pedestals,
15:13
take off our white coats,
15:15
and show our patients who we are
and what medicine is all about,
15:17
that's when we begin
to overcome the sickness of fear.
15:20
That's when we establish trust.
15:23
That's when we change
the paradigm of medicine
15:25
from one of secrecy and hiding
15:28
to one that is fully open and engaged
15:29
for our patients.
15:32
Thank you.
15:35
(Applause)
15:36

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About the Speaker:

Leana Wen - Emergency physician, public health advocate
Dr. Leana Wen is Baltimore City's Health Commissioner.

Why you should listen

Dr. Leana Wen is the Baltimore City Health Commissioner. A physician and public health advocate, she has traveled the world listening to patients’ stories. Born in Shanghai, she was a Rhodes Scholar at Oxford, a reporter with The New York Times’ Nick Kristof, a fellow at the World Health Organization and the Director of Patient-Centered Care Research in the Department of Emergency Medicine at George Washington University.

Inspired by struggles during her mother’s long illness, she wrote When Doctors Don't Listen, a book about empowering patients to avoid misdiagnoses and unnecessary tests.

As an outspoken leader among a new generation of physicians, she served as President of the American Medical Student Association and as Chair of the International Young Professionals Commission. She also helped create Who’s My Doctor, a campaign for radical transparency in medicine. Read her own transparency statement, and find more resources on TEDMED.

In October 2015, she wrote a blanket prescription, or "standing order," in Baltimore City which covers anyone trained to administer naloxone, a medication that reverses the effects of drug overdoses. Under the order, medication will be available on demand to everyone with the proper training to use it, potentially saving many lifes that might have been lost to overdoses.

More profile about the speaker
Leana Wen | Speaker | TED.com