When I was seven months pregnant I was told my baby was a girl and likely would not live to be born. If she did, her life would be short- days, maybe hours. A perinatologist told me this, using what she assured me was the most advanced technology available. It made her certain. It made her confident of the rare diagnosis. And it made her completely disconnected from what her words meant to me. She told me to come back in two weeks.
"This is a Moderate Situation." In the next days, it was hard to know what to wish for. Actually, doing anything was hard. I binged watched The Sopranos, on VHS. I gathered second, third and fourth opinions, and was told — again, relying on technology—that maybe things was not so bad. I remember the exact words: “This is a moderate situation.”
Then three days before Christmas, an hour or two after a small earthquake, my baby was born. A boy. Amazing how quickly everything turned from pink to blue. He had challenges to be sure, but the forecast of devastation was not accurate. The next months were standard baby-raising days, with extra doctor appointments tossed in. When Gabriel was four months old he was diagnosed with hydrocephalus—the result of a stroke that happened before he was born. The shadowy remains of the stroke could be seen on a CT scan. Advances in genetics explained the stroke happened because Gabriel inherited genes that made him prone to blood clots. Technology told a lot about my little child.
A neurosurgeon placed a shunt into Gabriel’s brain to treat the hydrocephalus, a primitive device, but the most advanced and only option. And the standard baby-raising days returned. Until he was 20 months old, then he became very suddenly, very sick. After we spent several scary, awful days at a Reno hospital, I drove us to Stanford’s children’s hospital. Here Gabriel was in a place full of the most advanced machines, brilliant minds and innovative best practices medicine had to offer. There was no place he could be safer. I felt so relieved. And totally wiped out.
Gabriel’s breathing and heartbeat were being monitored closely, every time he wiggled the alarms would blare. Every time we would almost be asleep the racquet and worry would begin again. The nurse could see how tired we were and she wanted to take care of me too, so she did the logical thing—the logical, compassionate thing—she turned off the sound on the machine next to his bed. I clearly remember thanking her when she did it. But unknowingly, she had done a lot more, she had turned off all the alarms everywhere—at the bedside, at the nurses’ station and on her pager. The manufacturer of the monitors would later explain they didn’t think anyone would go through the trouble of navigating through seven screens to turn off the alarms, so they didn’t go to the trouble of including a failsafe that could have stopped her. They were wrong; by failing to compensate for the genuine and appropriate compassion a nurse felt for my son and me, the technology failed all of us. So when the Gabriel’s shunt stopped working and his heart stopped beating, there was no sound.
We Humans are Too Beuatifylly Flawed. Advances in medical research and technology will never be immune to the fallibility of the human element. All state of the art mechanisms are filtered through our Paleomammallian brains, the part of our brains that give us emotion, intuition and memories. Our complex human systems give us what we want and need in medical care—compassion, connection and hope, but they also give us what we least want—fear, frailty and confusion. Because of this, even with continued advancements, zero errors in medicine is impossible—we humans are just too beautifully flawed. But this does not give us an excuse not to try. It gives us a mandate to be ready when things go wrong.
What Will You Do When Thins Go Wrong? Consider what you will do when things go wrong. What will you do right after you call your lawyer— because I know that is the first thing you will do. What will you do when the human element trumps your technology? When our ancient brains override your users’ manual. When your best intentions, work and effort is not enough, and what you least want to imagine comes to be. All of the goodness you have created will be erased if you do not do a good job of handling the fallout of errors.
Cut and Infected All Over Again. I do not mean to imply that of this is simple. I know it is not. These matters are complex, and require elegant, deliberate responses— all players and their motivations must be carefully considered. I encourage you to contemplate this now, not when you are forced to by necessity. When all the people involved in medical errors, patients, families and clinicians are not treated with honesty and compassion, they are further injured. Cut and infected all over again.
Disclosure, Compassion and Transaperency = The Standard of Care. Disclosure, transparency and compassion should be the Standard of Care for responding to the unexpected in medical care. By disclosure and transparency I mean being accountable and telling the truth. Transparency is not the view of an event from 30,000 feet above, where shapes are fuzzy and details impossible to see. Transparency is an explanation from the ground, it is look me in the eye and explain until I stop asking questions. Transparency is information democratized. Everyone has access and everyone is heard.
Telling the Truth is Bleeding Edge Innovation? How is it that telling the truth is seen as bleeding edge innovation? Hospitals being transparent after the unexpected happens should not be revolutionary. It should be mandatory. Extending care to the people involved in errors should not be considered heroic or exceptional, it should simply be done as good patient care.
If Your Child Died Becuase of a Medical Error, How Would You Want to be Treated? Compassion is easier to describe than transparency. I ask you a single question to help you define compassionate care: How would you want to be treated if your child died because of a medical error? Let that thought be your guide. If it is not enough, call me. I will help you.
The monitoring technology essentailly failed because the manufacturer didn’t understand the environment where they placed their machines. They didn’t consider the human variables—even the most obvious—the need for sleep. And they didn’t prepare for a motivated, over-worked nurse who would want to make a situation better for her patient. I am sure the equipment went through extensive testing, but still the machine did not pass the muster of human interaction. And that made it useless.
400, 000 Deaths, 2,100,000 Injuries in the US each Year, because of Preventable Errors.
If you are looking to change the world, do something about this: 400,000 deaths a year in US hospitals resulting from errors. This is the same as two jumbo jets full of passengers crashing everyday. This means every year there will be at least 400,000 people like me who could get up here and tell you about losing a loved one. And more than 2 million who could tell you about how they were injured. That is a lot of sadness and tragedy, I doubt any of us could endure sitting through that.
There is a school of thought that the numbers are so staggering, the problem so immense, with so little accountability, that there will never be real improvements made. This should have us all concerned, because we all are stakeholders in this reality. If a thousand people were dying everyday because of air travel, how eager would you be to book your next flight?
Collaborate. Look for Problems & The Solutions. It would have been easy and expected for Stanford to go silent after Gabriel died, the way the hospital in Reno did. They could have hoped I would be so devastated that filing a lawsuit would be beyond me. They would have been right. But they didn’t do that. They didn’t prey on my vulnerability and lack of legal understanding. Instead, they sought to work and collaborate with me—to look for the problems and the solutions.
Transparency = Be Safer. Save Money. This is where the opportunity lies, and the obligation. By being honest and transparent after the unexpected happens, we all can be safer. And save money. We can find the deadly system failures and act to fix them. When the weakness in the monitors was found, all other hospitals were alerted to the deadly potential in the machines. Sometimes, I wonder if that weakness was known, if someone somewhere knew the potential for disaster, but deliberately chose to be silent. I don’t dwell on what might have been for very long, it puts me on the fast track to crazy town. And I don’t like it there.
Now, back in this place with the most advanced machines, brilliant minds and innovative best practices, I work with Risk Management to help patients after they experience a medical error. I started working with Stanford six years after Gabriel died, many lawsuits last that long or longer. It is possible that the people I work with now as colleagues and friends, I could have met in a courtroom as adversaries. Instead of working with them to shift the culture from deny and defend to disclosure and transparency, I could have spent the past years reliving the worst experience of my life. No part of that would have been healing. The disclosure work we do is complex and challenging. In my role, I ask a lot of questions and sometimes, maybe often, say things not everyone wants to hear, but still they are patient. And still they listen.
Technology will continue to push us forward giving us medical miracles. Now, along with these terrific technical improvements, healthcare needs advancements in compassion and transparency. Because, human beings don’t advance at the same pace of machines and will never have easily upgradable operating systems, we need to find ways to work within the limits of our imperfections. Our humanness will continue to give us tremendous triumphs and inevitable tragedies. It also gives us the drive to make things better when we fail.
I'm so sorry for the loss of your son. Thank you for sharing your story and trying to make good out of a tragedy.
Posted by: tracy | September 07, 2014 at 05:32 PM