Translator: Yaffa Kurzweil
Reviewer: Peter van de Ven
The nurse grabbed the recliner
and jerked me awake.
I heard "Code Blue"
and the room filled with people.
In that instant, I knew he was gone.
The doctors' words attempted optimism,
but their faces betrayed them.
The next hours were awful.
My sweet boy had become
a corpse hooked to machines.
I sat next to him,
begging him to come back to me.
But really, I wanted to flee.
I didn't want any of this to be happening.
I wanted to wake up
stiff and uncomfortable
in that ugly blue chair
and realize it all was just
a very bad dream.
But this was far worse than a nightmare.
My 20-month-old son had just died
in one of the country's leading hospitals.
On Thursday he was sick
and on Tuesday he was dead.
That night when he had been
admitted to the hospital,
white circles with wires were stuck
onto Gabriel's bare little chest
to monitor his breathing and heartbeat.
Every time he made the slightest
little wiggle, the alarms would go off.
And they're loud.
Every time we would almost be asleep,
the racket and worry
would start all over again.
We'd already spent sleepless
days and nights in my local hospital,
where he had been misdiagnosed
again and again.
But now, we were in a university
hospital for children.
Finally, here,
I felt safe and very tired.
And I'm sure the nurse
could see how tired I was,
and she wanted to take care of me too.
So she did the logical thing,
she turned off the alarms
on the machine next to his bed.
And I thanked her when she did it.
I was so grateful for the prospect
of silence and sleep.
Later, doctors and administrators
from the hospital would explain
that actually, unknowingly,
she had done a lot more.
She hadn't just turned
the racket off in the room,
she turned off all
of the alarms everywhere:
in his room, at the nurses' station
and on her pager.
Later, the manufacturers
of the monitors would explain
they didn't think anyone would
go through the trouble
of seven screens
to turn off all of the alarms.
So, they didn't include
a fail-safe to stop her.
They were wrong.
So, when Gabriel's heart stopped beating,
there was no sound, just quiet.
Nothing woke me until
several minutes had passed,
and I was being jerked awake,
and the room filled with people and panic.
Imagine if you were that nurse,
if you had done what she had done.
You're doing your job,
a demanding job, an important job,
and you do something
that causes someone to die.
A beautiful child dies because you think
you're doing a good thing.
Then your shift is over,
and you have to look his mother
in the eye and tell her good-bye.
And the next day, you're expected
to go back to your job,
carry on, go about your business,
all the while hoping and trusting
that nothing else terrible happens.
I could never do that job.
I'm not that brave.
My response to what happened
to Gabriel is not unique.
Like most people who have
experienced errors in medical care,
we want three things:
we want an honest, transparent
explanation of what has happened;
we want a full apology;
and we want to know and see
that changes have been made
to ensure that what has happened to us,
never happens to anyone else.
Unlike what we can see nightly
in television courtroom dramas,
people don't immediately seek lawyers.
We want answers, not money.
People hire lawyers because they
feel deceived and abandoned.
It is a very emotionally
and financially expensive last resort
that none of us want to do.
And the thing is,
we all make mistakes.
It's just that for most of us,
the consequences are pretty small.
I don't hit the submit button
in my online banking account,
and the power company gets paid late
and I get a little fee.
Or I forget that on Wednesdays
school gets out early,
and my daughter is annoyed
when I'm late to pick her up.
I'm annoying, so,
pretty used to that.
We all know that the power company
doesn't expect a whole lot from me.
And I hope my daughter knows
that though I may be late,
she also knows I'm
always going to be there.
But we expect so much more
from people in medicine.
We trust them with what
we value the most,
our lives and our loved ones.
And then expect impossible perfection.
We want the human element
when it means kindness and compassion,
like the nurse trying to get us
a couple hours of sleep,
but we deny it when it means
possible failure.
We're never going to have it both ways.
The day after he died, Gabriel's nurse
left that hospital for good.
I hope she was not fired.
Legally, I cannot be told,
but I know she never returned
to that children's hospital.
And I get it. I wouldn't be able
to go back there either.
And one of the pediatric neurosurgeons
who took care of Gabriel,
he later quit practicing
medicine altogether.
All of their expertise
and wisdom and experience
is no longer helping children.
That is another tragedy
and another very expensive system failure.
Unfortunately, hospital adminstrators
don't tend to respond to medical errors
with openness and transparency.
They react with a legal version
of fight or flight.
"Deny and Defend."
This means, keep your head down, shut up,
and let the lawyers handle everything.
This is a very dangerous
and expensive response,
that we all should be
concerned about.
It would have been easy
for the university hospital administrators
to blame the nurse, fire her,
and assume the problem had been solved
because the bad apple was gone.
It would have been typical
deny-and-defend behavior
for them to ignore my questions,
to go silent, and hope I couldn't gather
my thoughts enough to file a law suit.
It would have been a safe bet.
But they didn't do that.
They didn't prey on my vulnerability.
Instead, they investigated,
they explained, took responsibility,
and apologized.
Then they asked me
what else they could do.
It made all of the difference.
Transparency in medicine
can help heal our medical system,
and we all know that it
needs a lot of help.
By being open and honest
when the unexpected happens,
we can learn from our mistakes.
We can find the deadly system failures,
and we can act to fix them.
After the university hospital
investigated Gabriel's death
and the weakness
in the monitors was discovered,
all other hospitals
using the same equipment
were alerted to the vulnerability.
Maybe, that helped someone else,
I will never know.
But it still comforts me now.
After he died, the little plastic ID band
that was around his tiny wrist,
should have been slipped onto mine.
There was nothing more
that could have been done for him,
but there was plenty
that needed to be done for me.
I needed an infusion
of truth and compassion.
And the nurses and doctors
who took care of him,
they needed it too.
We all should have been given
ID bands and become patients that day.
Death is a full stop
for the patient in the hospital bed,
but it is only just a very
terrible beginning
for the survivors left in the room.
Hospitals should extend
their care to these people
because the impact
of these kind of experiences
is slow, painfull and toxic.
This is how transparency
can help the survivors.
And these kind of experiences,
they demand that we relive them,
over and over again.
And those memories become
dense and strong, like thick black coffee.
And just like too much caffeine,
that reliving keeps us up at night
and can make us a bit sick.
And the parts of these visions
and memories that we have,
the parts that don't
make sense and are unclear,
they become void, so we fill them in.
This phenomenon is translated
directly from Latin
as "making shit up."
We wonder if things could
have been different.
We feel guilty.
Maybe we place blame
where it doesn't belong.
This is how transparency is healing.
It finds truth, and it can take away
the infection of guilt and doubt.
Gabriel was treated
at two different hospitals.
He died because of mistakes
made at both of them.
Accidents that no one
wanted to have happened.
But how I was treated
after he died was no accident.
How they responded to those mistakes
was very deliberate.
Both had the opportunity
to learn from my son's death
and be transparent.
But only one did.
So, though I really wish I didn't,
I know both sides
of the transparency coin.
The university hospital didn't hide
behind legal maneuvers and dismiss me.
They learned, they explained and they
changed the procedures in their hospital
to ensure that all of the children
who were patients there were safer.
Now, they encourage me
to share my ideas,
they seek out my opinions,
and they value what I
have learned from Gabriel dying.
They give me the opportunity
to help people.
And that makes his life bigger.
But the local hospital ignored me.
By going silent,
they didn't just humiliate me,
they denied Gabriel his dignity.
And after more than eight years,
that wound is very far from healing.
I wish the story
I just told you was rare,
but it is not.
Errors in healthcare are common.
The exact numbers are hard to determine -
this is another side effect
of deny and defend.
But a shocking accepted number
is that 100,000 people
will die in the US this year
because of preventable mistakes.
This means, this year, there will be
100,000 opportunities to learn.
100,000 lives we should honor,
100,000 opportunities to choose
truth and compassion over deny and defend.
I know what I'm asking for is big.
I want a culture change.
Maybe I'm talking about a revolution.
And I know what the opponents say,
that transparency in medicine
would just be a field day for the lawyers,
insurance companies will never play along,
and the already busy hospitals
would just be distracted by it.
But case after case, study after study
proves the opponents wrong.
Transparency in medicine will
save us money and make us all safer.
Those are both good and nobel pursuits,
but it's not why we should do it.
We should do it because eventually,
we all are going to need
to wear one of those plastic ID bands.
Eventually, we all are going to need
the good, healing medicine
of truth and compassion.
Thank you.
(Applause)