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.