Emma’s skin was worsening each day. Hundreds of pink nodules formed on her hands and face. Then, her skin started sloughing. The first day I walked into her room, she had an ice pack applied to her mouth. When she took the ice pack off, her bottom lip peeled off. In the following days, the rash spread to her legs and arms, like a vine overtaking a tree. By day three, baggy blisters formed over her rash on her arms, chest, belly, back, and legs.
On day three, the dermatologist told me she was too complicated for our hospital. Initially, the consultant thought she was having a reaction to a mycoplasma infection, but when I messaged her pictures of Emma’s worsening blisters, she replied, “She needs to transfer to a higher level of care.”
I called the university hospital and spoke to their dermatologist.
“I’d love to help you out but sounds like were full,” he said. The hospital access operator on the line confirmed it.
I had heard that phrase multiple times since the pandemic. The area was gridlocked. Beds were premium.
On day four, Emma spiked a fever. The floor nurse called me.
“I spoke to the university and they told me we should start looking elsewhere. We have to get her out of here.”
Even though she wasn’t in our ICU, my hunch was that Emma would soon need an ICU bed at a burn center. From my time training in Minneapolis, I know that states have only a few burn centers. Minnesota has two, both within the Twin Cities. Wisconsin has two. I looked up the other burn center, about ninety minutes from our location, and called the operator.
“Can you put me through to that hospital?” I asked.
She connected me to their burn surgeon.
“I’m hoping I can get your help,” I said to the surgeon.
I described Emma’s clinical course until that moment. I was hoping he would accept her for transfer.
“Does she have a lot of open wounds? Or is this all just a rash?” he asked.
I described her skin exam accurately. I had been on the other end of the line where someone told me inaccurate information in order to get me to accept a patient for transfer, but I remained truthful.
“At this point, it’s mostly a rash but she has a lot of blisters forming now.”
“Are they open?”
“Not at this point.”
“Okay,” he said. “She doesn’t sound sick enough to need our burn center right now, so she can stay there with the support of your dermatologist.”
The surgeon threw me a lifeline.
“Call us back tomorrow if anything gets worse.”
I will, I thought.
“Okay,” I said.
I took down their digits and created a new contact in my phone.
The natural course of Emma’s skin disease is that her blisters were going to pop. It was inevitable.
After I hung up with the burn surgeon, I felt depleted, like I didn’t do a good enough job on Emma’s behalf. No, her blisters weren’t open, but her largest organ was failing.
She had barely left her teenage years behind. She was in school and had recently gone to her primary care physician. Her physician prescribed a medication for depression three weeks prior to getting hospitalized. Then, Emma noticed a rash and her eyes being irritated. Urgent Care prescribed her prednisone and anti-bacterial drops, not knowing what was to come.
While in the hospital, her face became puffy with blisters. Her eyes swelled. Though her vision remained normal, it was too much work for her to keep her eyes open, so she always kept them shut when I spoke to her. Her lips cracked and by day three, she looked like a trauma victim, always bleeding from her mouth.
Each day I saw her, my heart ached for her, but I was careful to never show this. Emma needed to know that her team was working for her. The university dermatologist told me to start intravenous steroids and intravenous immunoglobulins to calm down her immune system. He also advised me to consult an ophthalmologist to see Emma every day to support her eyes. I asked the infectious disease doctor to see her as well, to double check my work, and to see if any infection was contributing. I updated our dermatologist every day but despite having multiple physicians seeing her, the scary part was that her body was going to do what it wanted.
As a hospitalist, I’m typically in the position of asking for help from other specialists. The way I was trained at Hennepin County was that I make my own assessments on patients and when I have a question for a consultant, I place a consult and ask them to answer my question. Multiple factors go in to my placing a consult or not. Sometimes, ego gets in the way.
“I can manage this,” I’ll think to myself.
Or, sometimes, if it’s a soft consult, I’ll defer. They’re busy, I don’t want to bother them.
Or, depending on which specialist is available, they will be rude or condescending and I don’t want to bother being spoken down to. Ultimately, in the end, I have to be guided by doing what’s best for the person in front of me. And that, that requires very clear communication.
In Malcolm Gladwell’s book, Outliers, one of the chapters titled “The Ethnic Theory of Plane Crashes” highlights the importance of clear communication. He notes that plane crashes don’t happen like they do in the movies - no clear engine explosion or a “Dear God” gasped by the captain before it goes down. Plane crashes happen because of an accumulation of minor difficulties.
The characteristics in a number of plane crashes are: the plane was behind schedule so the pilot was hurrying, the weather was bad, and then the most important - two pilots had never worked together before so their communication is flawed. That’s when the errors start and it snowballs from there.
Gladwell cites the case of Avianca flight 052 in January, 1990, which took off from Medellin, Colombia enroute to New York City’s Kennedy Airport. Dense fog and strong winds made landing conditions poor. Hundreds of flights were delayed that evening on the East Coast. The plane circled over New Jersey and New York and after 75 minutes of delay, Avianca was cleared for landing. They missed their first approach due to strong headwind. They circled over Long Island and before they could make their second approach, the Boeing 707 plane crashed into an upscale town on Long Island. Seventy-three of the 158 passengers died. The reason for the crash: the plane had run out of fuel.
The transcript from Avianca 052 shows the communication between the captain and first officer after they miss their first landing. The captain remarks that he doesn’t see the runway. Ten seconds pass and the first officer, seemingly to himself, says “We don’t have fuel.” Seventeen seconds pass and Air Traffic Control tells them to take a left turn.
The captain screams, “Tell them we are in an emergency!” to which the first officer says to Air Traffic Control: “That’s right to one-eight zero on the heading and, ah, we’ll try once again. We’re running out of fuel.”
According to one of the controllers that night who later testified, the first officer spoke “in a very nonchalant manner…there was no urgency in the voice.”
Linguists use the term “mitigated speech” to describe the manner that the first officer communicated in. Mitigated speech happens when we try to downplay or sugarcoat what we’re saying. We mitigate when we’re being polite or feeling ashamed or embarrassed.
In medicine, mitigated speech happens frequently. A trainee can be admonished by an attending in front of others for not knowing something. Physicians can be rude or short to nurses seeking help or clarity on a patient plan. Consultants speak down to generalists like me. In turn, all these interactions affect how information is communicated.
After I hung up with the burn surgeon, I asked myself “Was I too passive?” “Should I have insisted on a transfer?” Did I mitigate my speech? I went back and forth.
You’re a fool, you should’ve asked for the transfer.
No, no, I was talking to the almighty burn surgeon, they know what’s best.
But the patient in front of you will need a burn ICU!
The next day, I reviewed Emma’s chart. She had several fevers overnight. I returned to examine her. She laid in bed, eyes closed. I checked the pads underneath her body. Dark circles saturated the chucks pads underneath her arms.
As I prepared to call the burn surgeon again, I reminded myself, clarity saves patients.
I told myself to be clear this time. Ask for a transfer. At this point, Emma had Steven-Johnson syndrome, a rare skin condition. Her wounds were now opening up. Be clear.
This time they connected me to a different burn surgeon. I caught him up to speed.
“Her wounds are now opening up. She is spiking fevers. Her skin exam is worsening and I would like to transfer her to your facility.”
“I agree. I’d like to help her out. Your university hospital doesn’t have any beds?”
“They don’t. They told me to reach out to other facilities. The only other burn centers are in Chicago or Minneapolis.”
“Oh, okay. Do we have any beds for her?” the surgeon asked his hospital operator.
“We have one ICU bed.”
“Let’s get her there.”
They accepted her. She would have a bed at the burn ICU. After I hung up, the tension in my body melted away. Emma would have a chance. She would get to the right location and have access to all the proper specialists and nurses.
The last patient I had with Steven-Johnson Syndrome (SJS) transferred to a university hospital burn center and eventually died. They were elderly and chemotherapy had caused a violent skin reaction. In Emma’s case, the only medication I could blame was the antidepressant.
The mortality rate of SJS is estimated to be around 5% and when it evolves to toxic epidermal necrolysis (TEN) - when more than 30% of the body’s skin detaches - the mortality rate increases to >30%, though it varies widely with age, predisposing conditions, and the presence of infection. When skin starts to detach, infection is the main reason patients die. In the burn center, patients get treated with powerful analgesics and anesthetics while nurses do wound care. Nutrition is given via feeding tube and fluids are given intravenously as patients are in a highly catabolic state.
Now that Emma was going to a center equipped to treat her, I felt her mortality rate decrease as I walked back to her room to update her and her dad. Her father, who had been at her side around the clock, was happy to hear of the transfer. I stated clearly my request to him.
“This is my card. It has my cell phone number. When she pulls through this, and with her permission, please call me and let me know how she’s doing.”
“Will do,” he said.
One of these days, I hope to receive a call from an unrecognized number.
All identifying patient details have been changed in this essay.
This is a gripping story, Istiaq. I always love to read your analysis, questions and emotions as a physician. Your honesty is refreshing.
Also, I'd never heard of mitigated speech, and as a highly sensitive person, I feel like I've been made to mitigate my speech all my life. This concept is for sure making its way into the book I'm writing -- thank you!
Wow, Istiaq. Just wow. ❤️