It was about 1030 in the evening and I was at home, settling in and at the same time wondering if I would get through the night without hearing from our resident on call. Well, we were both on call, but he would get the first call and then get in touch with me. I was hoping for sleep and not excitement. On our in-patient service we care for women in labor and manage their deliveries, and then care for them and their newborns after birth. We also care for adults admitted with adult medical (and sometimes surgical) problems necessitating a stay in the hospital. It was calm at that moment and there are no guarantees in this job.
When the call came, I took a deep breath and listened to my resident’s report. This patient was in the ER and needed admission. He told me she was pretty sick, probably a pneumonia but maybe a pulmonary embolism, and she was in a lot of pain. On top of her acute problem, she had major chronic health challenges. She was only 31, but she had a form of muscular dystrophy that was diagnosed during her teens, leaving her with spasms of some muscle groups and weakness of others. Recently she had gotten her first electric wheel chair. She could transfer from it to a couch or bed, but not walk much more. What we both knew was that pneumonia, because of her weakened chest wall muscles, could become a recurring event. What we did not know was what she knew about her life expectancy.
He had appropriately started her on antibiotics and some breathing treatments, and he reviewed the scan that showed it was not a pulmonary embolism. I picked up my things and headed in to see her.
It’s a short drive from my house to the hospital and the drive is through a beautiful wooded Arboretum that always calms me as I race to a delivery or whatever pulls me in during the late hours. On the drive that night I wondered, what is her life like? What does she do with her time? She was wheelchair bound, too weak to walk now. She had to know her life expectancy was limited. Our resident has told me she lived at home with her parents and that her mom was in the ER with her.
Another thing was the pain. She was in pain and asking for increasing narcotics. I wondered, hmmmm, how much is the sack around the lungs, the pleura, that can really hurt when inflamed and how much was psychic pain? What was she doing to manage that? She must have some, right?
Before I was even aware, I had painted a picture of this young woman: chronically ill, disabled, little life quality, now sick and needing antibiotics and wanting pain medications.
During that week we had cared for another young woman, a lung transplant recipient, who at 21 spent her days at home doing nothing but playing computer games. I was never able to figure out whether she was depressed, insecure in a world she could now enter with more health than she had as a child, or what held her back. But knowing she was healthy enough to be in school or working, I had to work to not judge her choices. I clearly was projecting her story onto a reality I was creating in my mind for this woman I had not yet met.
Entering the exam room in the ER, this is what I saw: a young woman curled into a ball. With every breath she moaned. She wasn’t breathing fast and because she was not using a lot of extra muscles to breathe, I could tell she was not in respiratory distress (that’s our medicalese for an outsider being able to tell you are having trouble breathing). OK, true, she had oxygen on through those prongs in her nose, but it was not turned up very high, so it clearly was working.
Her mom was sitting at the bedside reading. 60ish, eyes drooping, almost asleep over the book.
I opened with an introduction of me to them and then asked why they were there, apologizing for the fact that they had answered this question already, several times.
“Mom, you tell her. I’m hurting to much to talk. And I’ll start coughing,” she said.
Her mom told the story of fever, cough, trying the inhalers and chest thumping they had been taught. None of it worked. I knew this from the history the resident had obtained, his exam, her labs and imaging studies. And I wanted to hear it fresh to confirm it.
As we moved along, I was needing to answer that question that nagged me during the drive in to the ER. What was her life? As in living her life? Maybe it was my innate curiosity. Maybe it was I really didn’t want her to be like the other woman who seemed to have abandoned life. (Oh, right, those are my standards…and who am I to dictate what is a valuable life? Have you ever caught yourself in that bind?). Maybe I really wanted to connect with her. Maybe all of the above? (I hate those questions on tests that have is it 1,2,3? or 2, 4? or 1,3? or none of the above. Just sayin’)
Getting to the social history part of our script includes things like where were you born? With whom do you live? What is your school history? Do you work? Where? How do you spend your days? Who supports you? What are your stresses? (and more, depending on the person and their story).
I opened up: “I know you are in a lot of pain. Is this typical?”
She answered, “No absolutely not!”
I countered, “OK, we will help with that. Can I ask you about you and your life? I am really interested in what school was like, what you are doing now, how you spend your days when you are not in the ER with a pneumonia.”
“Well,” she said, “I am pretty busy. I work in a book store part time. I’m a writer so I also tutor kids in their language arts course. And then there is this start up that is trying to make documentaries about how people with chronic illness have a hard time getting ahead in their jobs. I am a volunteer with that.”
Boom. Assumptions shattered. I had both made assumptions and given her a “single story.” What the resident told me, colored by the experience with a different patient, shaded by my own biases, and outlined in the drive in had given her a story in my mind that was completely inaccurate.
Yesterday’s post, Tina Shang’s comments, and a wonderful poem by Nancy Woo all speak to how we make assumptions prematurely and as humans have a tendency to relegate each person to a SINGLE story that does not give the respect that is due to the complexity of the human spirit.
Take a look at this TED talk by Chimananda Adichie. If you have not already seen it, it is more eloquent than I can be.