How to pronounce "ven"

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)