Not with Great Frequency

Disclosure & Compassion = The Standard of Care (Medicine X)

     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. 

 

The Challenges and Possibilities of the Human Element in Healthcare

Last week, I had the honor of speaking at the International Conference for Patient and Family Centered Care, in Vancouver BC. The following is the text from that presentation.

The nurse grabbed the recliner jerking me awake. I heard Code Blue and the room filled with a crowd. In that instant, I knew he was gone. The doctors’ words attempted optimism, but their faces betrayed them— their hearts were broken. The next hours were awful. My sweet, joyful boy had become a corpse hooked to machines. I whispered in his ear, begging him to come back to me. I begged for this not to be happening. I wanted to wake up stiff and uncomfortable in that ugly blue chair and realize this was just a very bad dream.

But this was worse than a nightmare. My 20-month old son had just died in one of the world’s leading hospitals. On Thursday he was sick. On Tuesday he was dead.

That night when he was admitted to the hospital, white circles with wires were stuck to Gabriel’s bare, chest to monitor his breathing and heartbeat. Every time he made the slightest wiggle the alarms went off. Every time we would almost be asleep the racket and worry would start again. We had already spent sleepless days and nights in my hometown hospital where Gabriel had been misdiagnosed again and again. But now we were in a university hospital for children. There was no place where we could be safer. I felt very tired. I am sure the nurse could see how tired I was. She wanted to take care of me too, so she did the logical, compassionate thing—she turned off the alarms next to Gabriel’s bed. I thanked her when she did it, I was so grateful for the prospect of sleep. Later, doctors and administrators would tell me that she had unknowingly done a lot more. She hadn’t just turned off the blare in the room, she had turned off the alarms everywhere: in the room, at the nurses’ station, and on her pager. Thevmanufacturer of the monitors later explained they didn’t think anyone would govto the bother of navigating through seven screens to turn off every alarm, so they didn’t bother to include a failsafe that could have stopped her. They were wrong.

So when Gabriel’s heart stopped beating there was no sound. Just quiet. Nothing woke me. Until several minutes had already passed, then the nurse found him. Then I was being jerked awake, and the room filled with people and panic.

I think a lot about Gabriel’s nurse. I wonder about her perspective, how she remembers that night. Unfortunately, the environment makes it difficult for me to know. So I speculate. I wonder how she felt when she walked into his room and saw the flat, glowing lines on the screen. What is was like for her to tell me goodbye that day, look me in my dazed eyes and know, before I did, that my life was forever changed. And I wonder what it must have been like for her to go back to work, walk back into the hospita —probably hoping, desperately hoping nothing else would go wrong. I can only imagine the strength it took to do this after she learned how vulnerable she was, how fragile the system was, how easily it could fail her.

We need a new narrative.

I speculate about all of this, but really I will never know. The truth is that I am a healthcare outsider. I do not have a medical degree and have not spent hours in clinical rotations. I have fainted at the sight of blood—on television. I am certain, though I could never undertake the difficult job Gabriel’s nurse once did. I know this because I am not that brave.

Gabriel’s story is my credential. It is my power, my influence. I tell it to make an impression, hoping it will leave a mark on you and shift your thinking. This is the potential of his story and this is the reason I tell it. Because we need a new narrative.

To my outsider eyes, there seem to be endless efforts to improve healthcare — ways to save money and make us all safer. All very good pursuits. These bring heaps of good intentions, initiatives, checklists, surveys, studies, ideas and action plans all urging more things to get done in less time, resulting in higher expectations with a whole lot less patience.

Currently, there is a greater focus on the patient and family experience, and you all should be proud of that. It is the overarching reason we are here, after all. It is vitally important, but it is by no means the only perspective that matters. Patient and family perspectives alone create an incomplete narrative. And half truths do no one any good.

We need to hear all the stories including the nurses, doctors, and administrators. We need to hear about their best day as well as their worst. This is how we will be able to accurately and honestly understand our healthcare environment. To hear only of my and Gabriel’s experience invalidates the years of work, education and dedication of his nurse and his doctors. It also ignores an opportunity to make improvements. This tendency is myopic and dangerous and leads to gross misunderstandings like the alarm company that neglected to provide a failsafe in their alarm system. They only heard part of the story.

So where does improvement and change happen? Because right now we’re all stuck between the way we want things to be and the way they really are. Understanding both pieces is essential and it is the opportunity—we need our heads in the clouds AND our feet on the street.

 

Wishing, dreaming and wanting is easy. Together we could quickly collaborate on a list of what we want. Here is mine:

• Everyone values and has access to a healthy, balanced diet
• Everyone gets 8-10 hours of sleep a night
• Everyone takes responsibility for his or her healthcare
• No one smokes
• All adults love Pilates. All children love kale
• Insurance companies sanction and encourage preventive care
• Care providers are engaged and skillful—always rested, always focused
• All interactions happen in an atmosphere of compassion and understanding

We can choose to listen.

The more challenging—and I argue more urgent piece of this equation—is to understand the way things currently are. This will make us vulnerable, it may make us discouraged, it will remind us our humanness makes us prone to failure. And yet it is our best hope for making things better because we are the authors of this story, and it remains unfinished. We can’t go back and edit what’s already happened but we can change the ending. We can choose to listen. Choose to be transparent. We don’t have to agree to the status quo.

If you want to go fast go alone. If you want to go far go together.

It is good that the healthcare hierarchy is shifting. I am glad hospitals are no longer being built to center around doctors’ ease and convenience. And much will be gained from getting rid of visiting hours. These changes are long overdue. But the clinicians’ experiences and motivations cannot be ignored. Clinicians are as key to the healthcare story as the patients.’ They bring their struggles, motivations and humanity to the hospital everyday, along with their skills and expertise. This is the opportunity— to gather everyone’s humanity and story together, to find the solutions we will never find on our own.

About 25 years ago, when I was studying architecture in college, I learned to draw three point perspectives. This was before computers did the work for us, so I used a drawing board, T-Square and many erasers. The process is complex, it takes a long time and requires a lot of concentration. It is easy to get confused and lose your way. Essentially, this process bends space and time, allowing us to see an object from three perspectives with a single drawing. This is what we need to do to fully comprehend our healthcare environment. We need to see multiple views at one time. We need to value everyone’s perspective and insights: patients,’ families,’ physicians,’ nurses,’ volunteers,’administrators,’ — everyones.’ This is the only way we will understand the way things are. Only through understanding the problems will we find true, long term solutions.

There will be stories we don’t want to hear, like Gabriel’s—they may make us feel exposed and remind us the environment is worse than we might have thought. We might learn our doctors are afraid or our nurses are overworked. This will remind that we are all at each others’ mercy. Always.

All stories will not be profound, hopefully,most will not be tragic. Listening will not always seem purposeful and may feel like a waste of time. Many of these stories will be dull, or too long, and will illuminate nothing of importance in this quest. Lots will be self-indulgent because we all exaggerate the importance of our own struggles. That is okay, because sometimes the importance is not in the story but in the power it gives to the teller. Speaking up is vital for patients and families—it should always be encouraged. We need to hear every voice, not only the loundest and those that validate our arguments. We need to hear about the doctor who spent three hours on the phone negotiating with a patient’s insurance company, the nurse who is on her fourth twelve hour shift who knows all of her tasks are being measured and timed, or the housekeeper who makes a couple bucks above minimum wage and is saving every cent because her daughter wants to go to medical school. We need to understand these stories because they are the truth of our environment. We will not learn enough if we listen to stories in isolation, because they all overlap.

We all have a story to tell.

I have told Gabriel’s story many times. In quite coffee shops, low-lit bars, and a few times to large groups like this one. Once, along with another woman who lost her child, I spoke on a panel to physicians who worked in Stanford’s Pediatric ICU. We each told our story. Though the discussion was important and probably made an impact, it was not pleasant. I wondered if everyone was really there because of the lovely free lunch. Eventually, when politeness allowed, the meeting ended. I pushed the heavy door open and walked into the hallway. There were two nurses waiting for me. Both were crying. They remembered Gabriel from eight years before. Gabriel and I had not been in the pediatric ICU very long, less than 24 hours. But they remembered us. And they felt compelled to wait for me. I think they wanted to see I was doing ok— maybe they wanted that encouragement. What was so sad and demoralizing to me was that they were kept behind that big heavy door. Why weren’t they invited in? Why didn’t they feel they could make themselves welcome? What could the physicians and I have learned from them? I believe we could have learned a lot. Tradition and status need to stop keeping people outside the room. We all need help and we all are helpers. And we all have a story to tell.

Three years ago I started working with Stanford on their disclosure program. I work to take care of people when their care doesn’t go as planned. It is tricky, challenging work, and I am grateful for the opportunity to do it. Stanford goes to great effort to understand and explain what has happened in a patient’s care. Over the past years, I have learned that the first telling, the first, quick account rarely tells us much. It is only after careful listening and research do we come to know the whole story.

I believe in transparency. People need to understand all aspects of their medical care, even and especially, the parts that did not go well. These are the moments that remind us we are vulnerable and imperfect. I know this is difficult, but still I am baffled that telling the truth is considered revolutionary. Being honest is an innovative new idea? Really? We can do a lot better.

After Gabriel died, Stanford didn’t hide behind legal maneuvers as they easily could have done. They could have gone silent, dismissed me and hoped I couldn't gather myself enough to file a lawsuit—it would have been a safe bet. Instead, they investigated, explained and apologized. They made improvements to ensure the children in their hospital would be safer. When the weakness in the monitors was discovered, all other hospitals using that same equipment were alerted to the dangerous circumstances. Maybe it helped someone else—I do not and will never know. But it still comforts me.

I advocate for transparency because it helps us to see the whole story. It helps us learn, find system failures and act to fix them. Transparency is like a new lens. There was a time when our best and brightest minds believed the earth was the center of the universe, and hiccups where caused by frogs in our bellies. Advances in technology have given us lenses. Now we know the earth is not the center of the universe and telescopes let us see the birth of stars millions of light years away. Microscopes let us see hundreds of billions of cells in our own bodies. New ways of seeing have made us smarter, but we still have a long way to go.

This is my grandma Mary Schweitzer. We were good friends. When she was about 80 years old, she had her cataracts removed. The procedure went well. Afterward she told me, “I had no idea my windows were so dirty or my carpet was that color.” What else is right in front of our eyes that we are not seeing? What can we see if we remove the clouds of assumption, tradition and habit? Transparency can help us get to where we want to go, to where we need to go.

It would have been easy for Stanford to look no further than the nurse, to blame, punish and fire her. With the bad apple gone, all is again right in the world. But fortunately they recognized she was only one character in the story, and they looked to learn more. Turning off the alarms did not cause Gabriel’s brain to herniate. A failed shunt, poor communication, and slow responses did. The night Gabriel died, his nurse asked for help. I learned this detail of the story last summer. She knew he was not doing well and recognized he was in terrible pain. She knew to properly take care of him she needed help. She didn’t get it. I wish she had been more insistent and didn’t feel the need to go it alone. I wish her vulnerability had been accepted and there had been a safety net to catch her and Gabriel. And me.

Understand the Environment

And I wish Phillips, the manufacturer of the monitors, better understood the environments where they placed their machines—that could have helped us. But they didn’t, instead they set low expectations and banked on the status quo. They didn’t expect anyone would take the initiative to provide compassionate care offering a couple uninterrupted hours of sleep. They didn’t think anyone would go to the trouble of navigating through multiple screens, they denied Alarm Fatigue, not to mention a skilled nurse’s desire to take care of her patient. That narrow understanding of the environment put many people at unnecessary risk. It failed Gabriel, his nurse, and me. And to this day it still pisses me off. Why didn’t they design the monitors to be quiet at the bedside, but still alarm at the nurses’ station and on her pager? Is that so difficult? It is very possible I am not seeing the whole story? But I am certain they did not see the whole environment.

This is my aunt Mary Schweitzer. She had planned to go to medical school, but that was not her path. She raised three brilliant kids and when the youngest was in grade school she started studying Paleontology. This was in Montana, where fossils are plentiful. At one point, she was working on a T-Rex femur that had a strange cadaverous odor. She asked the seasoned and experienced paleontologists about the smell, they told her, ‘Don’t know, that smell is often in these fossils.’ None of them really gave the smell much thought. Does this theme sound familiar— questions being dismissed, curiosity being shut down? But Mary was curious and wondered about it. Eventually, after several years of study, endless hours in the lab and lots of controversy, she found there was collagen in that smelly bone. Those cells may be the source of the odor, no one knows for sure. We do know the disruptive force that led to her discovery was her relentless curiosity and that has forever radically changed paleontology. She is a Paleontology rock star because she refused to accept what everyone else ignored. She demanded to know the whole story.

After Gabriel crashed in the middle of the night, a neurosurgeon came to talk to me. He said, ‘the first twelve hours are really critical.’ I wasn’t sure what that meant and didn’t have the capacity to ask. After those 12 hours had passed and nothing changed, he said, ‘the first 24 hours are really critical.’ Now I understand he was doing his best to take care of me. Gabriel was not going to get better and he knew it. I think he was waiting for the numbing shock to wear off and for me to begin to comprehend what had happened. He was stalling and it must have been hard for him. I remember few of his exact words, but I remember tears were running down his cheeks when he said them. His humanity and vulernibility made me feel less alone and a little less afraid.

 Twenty-four hours after I was jolted from the recliner, Gabriel left in the same manner he did everything, with grace and love. He left before his grandma arrived at the hospital sparing her the image of his body full of tubes but empty of life. He became unstable, again I didn’t really understand what was happening and the details didn’t matter. There was a young doctor in the room, she wouldn’t stop nervously talking to me, she was doing her best to counsel and explain. She was hopelessly unprepared to deal with the situation—awful for me and awful for her. I put my hand in front of her face to get her to shut up. Then everything stopped and the room was vacant. People didn’t walk out the door—I believe they vaporized. A lot of damage was done in that moment, a lot of broken hearts dispersed with no ointments or methods to heal them. Death is a full stop for patients in the hospital bed, but only just a terrible beginning for ALL of the people left in the room — families, physicians, nurses- everyone. Hospitals should extend their care to these people, because the fallout from these events is slow, painful and toxic. I also believe it is contagious.

 People sometimes ask me why I didn’t sue. Some of you may think I am a chump, you know how the system works. You see how broken it is. Very likely, you think I made a stupid choice, naively missing an opportunity to be easily compensated for the loss of my son. But that never made any sense to me and still doesn't.

 Though I didn’t at the time, now I see what a threat I posed to the hospital— beautiful dead child, onry mother, easy obvious blame. All the ingredients for a risk management/PR nightmare. But, again, that is not the whole story. When I was seven months pregnant with Gabriel, I was told by a perinatologist that he probably wouldn’t live to be born and if he did he would live briefly in a vegetative state. She gave me this news in a flat tone and told me to come back in two weeks. I was devastated and knew I would never seeher again. I turned to my daughter’s pediatrician, he reviewed the diagnosis and said, “Here is the thing about kids—they don’t read books. They don’t know they aren’t supposed to make it.” That made me hopeful. His kindness and optimism essentially gave Gabriel to me. This same pediatrician did not recognize Gabriel’s shunt was failing—so he would have been a target in the lawsuit. Same with the neurosurgeon who put the shunt into Gabriel’s brain to treat the hydrocephalus, saving his life—he would have been a target, as well. I couldn’t sue the doctor’s inaction and not punish their compassion. I couldn’t punish them for taking Gabriel when they were the ones who had given him to me.

Truth of the Human Condition. People are not menus.

Forget everything you learned in philosophy class. This is the truth of the human condition. People are not menus, where we can order traits ala carte. Human nature gives us what we want: kindness, compassion, and knowledge; and what we don’t: vulnerability, inaction and confusion. We want a doctor’s expertise and skill, but want to dismiss her frequent insomnia, and anxiety over her medical school debt. We want a nurse’s efficiency, experience, and nurturing nature, and prefer to ignore the environment setting her on a path to burnout. Because we aren’t menus, we can’t have it both ways.

Expect more from us.

And this is why patients should not be protected from the big picture problems of healthcare. More should be expected from us. Hold us accountable. By keeping us from understanding, you are keeping your most motivated resources at bay, and insulting us. Patients and families are the most untapped resource in healthcare, we have so much to offer because we have so much to lose — and so very much to gain. But how can we help if we don’t understand the whole story?

When my work at Stanford is going well, I feel like I am saving the world. When it is going poorly, I feel like I am betraying my son. I get discouraged—change is made so slowly and I am impatient. Though sometimes discouraged, I am optimistic. But I am tired of telling Gabriel’s story. I am tired of being reminded of the cracks in my heart. I wonder what is the point? How many more times will I have to tell it before real change happens? At this conference, after I leave the stage, you will hear from the best and the brightest minds thinking about the patient experience. You will learn brilliant, new methods to improve the lives of patients and families, and hopefully your own. Though, probably no other will include mention of frogs or a T-Rex.

"I never saw it that way before.”

I offer no action plans or research to you today, but I do offer you some suggestions:

• Look relentlessly for new perspectives.
• Invite everyone into the room.
• Look for the smelly bones.
• Get rid of the cloudy cataracts of status and tradition.
• Question the hierarchy.
• Reward curiosity.
• Find a way to hear yourself saying, “I never saw it that way before.”

And when you do please tell me, because I need all the encouragement I can get. And that’s a story I desperately want to hear.

 

Keep Bad from Getting Worse

Almost nine years ago my son, Gabriel, died at the Children’s Hospital at Stanford University after a series of medical errors. Nearly three years ago, I started consulting work with the Risk Management team at Stanford. Using my own experience with medical errors, I attempt to navigate between the often black and white legal and administrative sides of medical error and complications; and the grey, emotional side of the patient's and family's experience. 

When explaining my work at Stanford I have heard, “So, you are trying to avoid lawsuits.” Often the phrase is accompanied by a dismissive expression and tone. I reply, “You are right.” But avoiding lawsuits does not equal dodging responsibility or denying consequences. It is about recognizing the short and long term needs of everyone involved— patients, families, care givers and administrators. Medical errors impact all of us, by being open, honest and deliberate, we can keep bad situations from getting worse. 

My work with Risk Management at Stanford has shown me the “other side of disclosure,” some may say the “Dark Side.” But what I have found are wise, thoughtful, compassionate people faced with complex, often heart breaking challenges. None of the work they do is simple or without consequence, and they are keenly aware of that responsibility. 

Of the cases I have seen handled by Stanford, the most challenging and frequent— are the ones where things went wrong, but nothing could have been done about it. In these cases, an extensive investigationreveals there was no error, no system failure; there is no one to blame. These are the situations that illustrate the risks that are inherently part of health care— the truth that nothing goes 100% right 100% of the time. Often, these are the cases that patients and families struggle the most to understand, and may result in claims. These claims have no merit and will bring patients and families no satisfaction. Unfortunately, no amount of transparency and compassion is enough to help them.   

In working with Stanford, I often consider what might have been. What would my life be like if Gabriel had died at another hospital? What if the hospital had responded typically — with deny and defend? What if getting answers and explanations about Gabriel’s death had required lawsuits and court dates? The past eight years would have required reliving and dwelling on an exceedingly painful event. I would not be taking what I learned from Gabriel’s death and using it to help other people, I doubt I would be any help to anyone. Yes, I am for avoiding lawsuits, and for taking responsibility.

It is, of course, challenging to find even a tarnished silver lining in a child’s death. But Gabriel dying at Stanford eventually became a glimmer of brightness. The disclosure and collaboration they presented to me eight years ago was radical at the time and sadly, in most places it still is. But we can’t wait any longer for disclosure and apology to become mainstream. We need to accept that medicinal care, by its nature is risky, and sometimes mistakes happen. And when they do, errors present not only disaster, but also opportunity and obligation. By being open and transparent after medical mistakes we can prevent them from happening again, making all of us safer. By being compassionate and truthful, we can be our highest selves— to treat others the way we all want to be treated. 

I only work on the very edges of healthcare— so I can only imagine— it feels good to face risk and be the hero: to remove a tumor, to master the latest technology, to save a life. But it is just as challenging, and requires as much bravery, to be the anti-hero…to be the one who makes a mistake, the one who owns up and admits to an error, then works to make a change. Hospitals, care givers and all of us, should be judged not only by our great successes, but also by how we respond to our failures.

 

Murmuring Valentine

Some things I can’t make up, like having my heart measured on Valentine’s Day.

Not long after Gabriel died, I knew that he had taken up residence in my heart. Not in that Hallmark sympathy card, ‘He will live in our hearts forever,’ bullshit way, but in a tangible ‘I can feel him pushing on my heart’ way. The pressure is in the shape of a cupped hand and I feel it in my chest on the right side of my heart. Not a pain, but a presence. At night I push back on that place, hoping to help me sleep, often it does.

I have an early morning appointment to have a scan done on my heart. My doctor is concerned about a murmur that has recently appeared. I am certain they will find his cupped hand on my heart, it will be a white glowing spot. I expect to need radical surgical intervention, maybe a pacemaker or a heart transplant. Whatever. I don’t have the energy to be afraid or worried.

I don’t know what to expect from this procedure. My visual thinking, artistic tendencies are both intrigued and horrified. Seeing a machine’s interpretation of my heart on a screen is surreal. I don’t like the idea of my essence being measured and translated into data points. It is my heart. It keeps me alive, it holds my stories and my love. How can that be converted into binary code? The colors are beautiful, the image looks like a time lapsed video of the Northern Lights, red, yellow, green and blue, expanding and contracting across the screen. I watch for a few moments then look away, seeing my heart lub dub outside of my chest is too much.

The glowing spot of Gabriel does not reveal itself. I am right. My stories and my love cannot be measured with a machine, they can only be known to me.

As I leave the technician says to me, “You have a very healthy heart for a 34 year old.”

“Thanks,” I say, “I’ll be 39 in two weeks.”

Time Passes

 

Gabriel was born on December 22, 2003, eight years ago today. According to the doctors he was four weeks early, so his first days were spent in the ‘Bear Nursery,’ the Neonatal Intensive Care Unit (NICU) for babies who are in really rough shape. He weighed five and a half pounds, and looked huge next to the two-pound preemies. Thankfully, he required little attention from the busy, buzzing nurses.

There was baby in the nursery that had Hydrocephalus. I knew it was a possibility that Gabriel would be diagnosed with that as well, so I paid special attention to that baby boy. I remember his mother. She looked scared, she didn’t speak English and seemed to have a hard time understanding the neurosurgeon. So did I, as I eavesdropped on his explanations. I was scared and sad for her. How in the hell was she going to manage the situation? I was so glad it wasn’t me.

After a couple days, Gabriel was wheeled across the hall to the ‘Bunny Nursery.’ Here things were a bit mellower. If a place that costs $15,000 a day, can be called ‘mellow.’ On this side of the hall, things were quieter, fewer beeping monitors, fewer people. Gabriel was jaundiced so was wrapped in a Biliblanket. Jaundice is treated by exposure to light, so someone created a blanket that glows. It creates a sweet glowworm green effect on the swaddled little babies. My daughter had been jaundiced too, so we simply let her sleep naked in a sunny spot on the couch. But with Gabriel everything was different, absolutely everything.

Gabriel spent 15 days in the NICU. Though it felt much longer. It was an interesting place to hang out, except that my baby was sleeping in a plastic box and strangers were taking care of him. The blunt reality is that an artificial environment is nurturing your baby because, for whatever reason, you can’t do it yourself. It sucks. It sucks a lot. And it was so unfamiliar, full of medical terms, tests and procedures. Descriptions and measurements of the indescribable, a child, a boy— snips, snails and puppy dog tails.

A priority in the NICU is getting the babies to eat on their own. Gabriel couldn’t manage this right away, though I can’t be sure he was given the opportunity. He was fed with a feeding tube, it went in his nose down to his stomach. The tube is called a Gavage, a term I would prefer to know nothing about. I held a syringe that was attached to the tube and slowly pushed the plunger forcing a cocktail of breast milk and formula into his belly.

The number of babies in the nursery would fluctuate. Some stayed for a couple days, quickly passing their discharge tests. Others were there longer. I noticed the babies who never had visitors, the ones who didn’t get picked up or held except when a nurse had a free moment and an inclination to sit in a rocking chair.

I asked a nurse about the lonely babies.

She said, “Have you noticed how often you are the only parent in this room?”

I had not until she mentioned it. I understand a bit why those parents didn’t want to be there. It was intimidating and scary, and though we had children in the nursery, we were slightly treated like we were unworthy. Not quite suitable for parenting, not quite capable of handling things on our own. We were trespassing on someone else’s turf.

All of this happened at Christmas time. I had a three year old at home and an early infant in the hospital. I made my way to the nursery as often as I could, at least twice a day. Sophia was too young to visit, so I satisfied her curiosity about her brother with photos and sketchy videos.

Sometimes I would bring people with me, allowed one visitor at a time. One friend, Gabriel in his hands, looked at me and said, “I don’t want to leave.” This was a remarkable considering the guilty sign of relief I exhaled every time I walked out of that room.

Each time I entered the nursery, I was required to scrub my hands and arms up to my elbows with a brush and medical soap. Now, I will occasionally smell that soap and the scent will instantly send me back to that time and place. That place of hyper care and plastic nurturing.

 

 

Vera Chroma

Mike Henderson gave this video to me for Christmas. But I <3 for Valentine's Day, too.

Push the Unpause button.

I was asked this morning why I stopped blogging. I don't, by the way, consider an eight month pause quitting! The following, in no particular order, or with any respect to the conventions of the English language are some explanations.

Time. My priorities are to my daughter, my family and friends, and to my job. Somewhere in that harried space that is life, I try to do things that are good for me. This rarely includes more time in front of a screen.

The things that I would write about are so intensely personal that crossing that public/permanent boundary is not always appropriate.

I would rather discuss ideas over a cup of coffee or glass of wine with smart thoughtful people than have a digital discourse.

I suck at the rules of English grammar. I punctuate a sentence the same way I mow my lawn- with no plan and marginal (but interesting!) results.

Vanity, I am under the delusion that people might actually read what I write so I want it to be brilliant.

I spent the weekend writing, it was a tormented task. Twenty legal sized pages of scribbled notes distilled down to 550 words. As much as I deny it, writing is one of the few techniques that effectively quiets the voices in my head.

Compare, Contrast. Then & Now.

Yesterday I had the opportunity to speak at the Stanford University Medical Center Summit for Clinical Excellence. The following is the content of the presentation.

I don't need to tell you it is brutal to lose a child, and it is not my intention to make you sad for me or for my son.

This is a story of contrast and comparison, between what I know now and what I knew before. 

My intention in telling you this is to bring something good from a horrible thing, to not allow it to become any worse.

When Gabriel was three months old he was diagnosed with hydrocephalus as a result of an intracranial hemorrhage he developed en utero. Three days later he had surgery to place a shunt in his brain. The doctors told me he could never wrestle, play soccer or football, that was fine. I was glad to think he could never be drafted.

The next 17 months were pretty normal baby raising days - bottles, diapers, laundry, smiling, crawling, and playing. More laundry.

He charmed a lot of people. Unlike his older sister, Sophia, he didn't care who was holding or playing with him and was happy wherever he went. His vision suffered from optic nerve damage, but that felt like a small obstacle.

I didn't think much about his shunt. I could feel it under his thick hair, as well as the thin tube down the side of his neck.

The advice regarding the shunt was straight forward and simple: try not to bump it and if he starts throwing up take him to the ER.

On a Thursday in August, when he was 20 months old, Gabriel started throwing up. A lot. Along with his most recent CT films, I took him to the ER at Washoe Medical Center in Reno, miraculously avoided a 3 hour wait, held him down for x-rays, and wrapped him up for the CT scan. The nurses gave me a new t-shirt since mine was covered in vomit. The CT scans showed no change in the size of his ventricles, Gabriel had no fever and no diarrhea. Possible problems with the shunt were overlooked given the normal CT.

I didn't know that CT scans are not an absolute when determining a shunt failure. Our pediatrician diagnosed Gabriel with a stomach virus, admitted him to the hospital, and we stayed there for three days.

Gabriel was given IV Phenergan to treat the nausea. Now I know that was a mistake, since this caused drowsiness, masking the neurological emergency. During our stay, there were peaks and valleys. He would feel good, crawl around the hallways with an IV in his hand, and then suddenly be sick again.

 
In the back of my mind I knew it was shunt failure, more surgeries and more time in the hospital were the scariest things I could think of.

I had no idea that four days later I would be telling my daughter that her baby brother had died, and hear her explain to me that she would never see him again. I had no idea that most shunts failed within the first two years of placement, or worse that shunt failure could very quickly be fatal. I was worried, but still I was happy to leave the hospital on Saturday.

When we got home Gabriel was okay for a while, but then he fell asleep. He slept and slept and slept. I could barely get him to wake up. I called the doctor who said he was probably hypoglycemic from not eating or sedated from the phenergan and he would be better soon.

He slept all day on Sunday too. He finally woke up when I put him in a cold bath. He must have felt like hell, but he still smiled and splashed in the water.

 

 

Dr. Edwards immediately started making calls to get Gabriel into Lucille Packard Children's Hospital, explaining to me the absurdly complex process of getting us admitted.

I called to make arrangements to be gone for a week and drove the 200 miles with Gabriel moaning and crying like a kitten.  Air ambulance was considered but it was determined that driving by private vehicle would be faster.

We got stuck in traffic on the Bay Bridge, I wondered if a helicopter could get to us.

 

 They expected us at 7 pm, we arrived at 7:02, I was so relieved to not have made a wrong turn, something I am very prone to doing. A lady who didn't speak English gave me cuts in the admitting line, she could see Gabriel was feeling terrible.

When we got upstairs to telemetry, the admitting clerk sharply said to me, "We were expecting you at 7." I could have really done without that comment.

I would learn later that Dr. Huhn had waited for us until 8:00, but no one had called to tell him we were there.

A pediatrician, who reminded me of my good friend Carol, sat and read Gabriel's thick chart. This impressed me and I felt reassured. There would be more doctors, nurses and paperwork that night, and multiple attempts to get an IV into Gabriel's dehydrated little arm.

A nurse came up from the ICU to help with the needle, the next night, this same woman, would be removing Gabriel's breathing tube and cutting locks of his hair.

I liked our telemetry nurse, tall and thin. Her name was Francis, that is my Grandma's middle name. I remember thinking she was so frantic and rushed. Later I would find out she was also taking care of a sick little girl who was having respiratory problems in another room.

Then it was late. I thanked Francis when she turned off the volume on Gabriel's noisy monitors. Eventually, everybody went to sleep.

Suddenly I was awake. The nurse grabbing the foot rest of the bright turquoise recliner, swinging me around saying, "Leilani, you have to get up!" Instantly the room was full of people. "Code Blue" blared from the intercom. Someone pulled me out of the room.

I know I do not need to explain the intensity that was in the air. In the commotion, my mother-in-law would lose the wedding band she had worn for 45 years, and I would know my son was gone.

 Twenty-four hours after I was jolted from the recliner, Gabriel left in the same manner he did everything, with grace and love. He left before his grandma arrived sparing her the image of his small body full of tubes but empty of life.

There was a young doctor in the room, she wouldn't stop nervously talking to me. I had to put my hand in her face to get her to shut up, I could have done without that too. Suddenly the room was vacant.

Later we would learn that when the nurse had turned off the blaring volume on the monitors, unknowingly the alarms had been turned off everywhere, the room, the nurse’s pager, and the unit clerk’s monitor. Gabriel had stopped breathing about 10 minutes before anyone knew it. His shunt had failed, his brain had herniated.

The following days and weeks are a hazy blur. I do remember the bill from Packard arriving less than a week after Gabriel's funeral for more $43,000. That was another item for the list of things I didn't need.

I started talking to doctors, friends, and other mothers dealing with hydrocephalus about what had happened. I learned a lot about hydrocephalus that I had never known. Then I got angry. It became clear that I had been very uninformed and undereducated about the condition that had killed my son.

It seems you get more information on the tag of pillow than when you get something implanted in your brain. Women with breast implants get cards to carry in their wallets telling them what complications to watch out for, where to call for help. No such convenience is issued with shunts. Apparently boobs are more important than brains.

The lack of accessible and contemporary information became my motivation for something better.

And a goal became very clear, I did not want another mother to learn too late, information about hydrocephalus that could save her child.

 As you can probably guess, I found myself in conversations with friends that included talk about lawyers and suing. Of course, I was talking to lawyers, right? Of course, you will sue the hospitals, right? What about Phillips who makes the monitors? I am still a bit resentful of Phillips, they failed Francis and a lot of people at the hospital.

I can't say that I didn't think about legal options, I did. I would also bet that some of you think I am a chump, you know how this system works. You see how broken it is. You think that I made a stupid choice, I naively missed a huge opportunity to be compensated for the loss of Gabriel. But that never made any sense to me and still doesn't.

 Gabriel's pediatrician, and still my daughter's, gave me faith in my son. He was the first doctor to give me any reason for optimism after we were told something was very wrong. He said, "The thing about kids is they don't read books. They don't know they aren't supposed to make it."

How could I acknowledge the unintentional errors but ignore the miracle he had helped me find? How could I hold individual parties responsible when the entire medical system is so broken? It failed me, my son and it is failing you.
Later, I was back at Packard, meeting with Pam Wells, Dr, Edwards, Dr. Huhn and administrators. I was pretty angry and came prepared with five pages of questions and rants, I made copies for everyone. I told them that I had a few things that I would like to discuss.

I so clearly remember Dr. Huhn saying "Why don't you tell us what you have to say first." Then I talked for 2 1/2 hours and they listened to me.

This meeting would lead Pam to understand my frustration and become one of my lead supporters. Thank you.

I started talking to the Hydrocephalus Association about some ideas. Somehow the pieces started to fall into place creating a powerful and rare combination of motivation, knowledge and funding.

Eventually with donations from Lucile Packard Children’s Hospital, the Hydrocephalus Association  website was recreated, providing comprehensive, accessible and immediate information. A vast improvement from what was available before.

Through this site, people can participate in research projects. Use a physician directory to find doctors by speciality and location.

Using modern technology, the Hydrocephalus Association has cut nearly $70,000 from their annual operating budget and now provides comprehensive information to the millions of people globally who are dealing with hydrocephalus.

 Again with funding from Lucile Packard Children’s Hospital, Gabriel’s Life.org came to be. Using the same concepts behind Facebook and MySpace, a community of hope and education was created. Through this project I became friends with two other women whose son's have hydrocephalus.

This is Shannon Christian’s story about her son, Reece. Shannon has uncooperative hair like me, along with hydrocephalus we talk about hair products.

And this is Angela Batterman’s blog about her son, Joseph.

Though I have never met these women, I have no doubt that if they had been in my life 3 1/2 years ago, I would still have Gabriel. I would have called them when Gabriel got sick. They would have told me to call Dr. Edwards on my way to the ER, they would have told me to question the Phenergan.

At the Gabriel’s Life site, with no considerations for time or distance, people can share comfort and tribal wisdom with each other.

Back to our theme of compare and contrast. When Gabriel was six months old we filmed a commercial for the hospital in Reno, the same one were Gabriel was born and spent 15 days in the NICU. The same one that hosted our visit to the ER and our stay when Gabriel was being treated for a “stomach virus”.

This is the comercial for Washoe Medical Center. Download Washoe

 The people at this hospital never said they were sorry for what happened. Never acknowledged there were any problems or moved to make any changes. They sent an ugly bouquet. Red carnations.

I invited them to participate in the creation of the websites, but they never acknowledged the invitations. They did, however, spend millions of dollars to change their name from Washoe Medical Center to Renown Health. Needless to say, I am not a fan.

This idea of saying you are sorry and being honest about mistakes, seems to be a revolutionary idea in the world of medicine. An avant garde policy, probably requiring heaps of meetings and reams of documentation, and in some places it is legally prohibited. But for me it is simply the right thing to do.

When bad things happen rarely are people honest, it is just too painful. They say things that make themselves feel better, things that will get them out of the situation as fast as possible. Things like, “Now you have a guardian angel watching out for you,” “Or at least he didn’t suffer” (I don’t think that is true), or my personal favorite, “I don’t have kids, but I had to put my cat to sleep once.” Seriously, people say these things.

When the shit hit the fan, I really just wanted honesty and I still do. I appreciate most the people who say, “I know what happened to you and it is so very awful. I am sorry.”
After Gabriel had crashed and we were huddled around his bed, Dr. Huhn called his fate a disaster, and when he said it there were tears running down his cheeks. That is such a powerful memory to me. That honesty is important, it matters. A lot.

In your world, you see suffering and death all the time, and I thank you for putting yourself in the place were that is a regular part of your life. For the rest of us those things are not typical, we are not accustomed to them and never will be. How you treat us in those moments is so important, they stay with us. The statute of limitations may have run out, but that doesn't keep us from reliving those moments. It won't stop us from being haunted by questions or comforted by honesty.

Life is sloppy. Bad things happen. There is no denying it. But when they do, work to keep them from getting any worse.

Sisterly String

Following is an email string between in my sister Jenni and me. Her comments and insights are so precious to me, and too good to keep to myself.

Hi Leilani,

I heard this story on NPR this morning as part of their very cool story corp project. It just made me weep in the car. It is a mother talking about the day her young son was killed. I thought her comment on her heart being amputated was well put.

Perhaps listen to it and then watch a really funny episode of The Office.

http://www.npr.org/templates/story/story.php?storyId=90959458

On Jun 8, 2008, at 8:55 AM, Leilani Schweitzer wrote:

Thank you for sending this. It hadn't occurred to me before to think about the things Gabriel would have said to us if he would have lived to talk. Strange how I missed something so obvious.

XO, L.

I like to think that he would say things like:

"I didn't want to but Sophia made me do it."

"I look just like my favorite auntie Jenni."

"Vote for Obama."

"I love you."

When asked "What is the square root of 52?"  He would reply in a cool, non-nerdy way "7.21110255".

Blue Kiss

I like this photo Dave took of Sophia and me at the Reno Bike Project Bike Out/Strike Out. Gene Simmons meets Mel Gibson goes to Cirque de Soile.