“I wouldn’t go in there if I were you,” a nurse warned. “That mom just ripped into the resident.”
As a first-year medical student, my role was simple: talk to the patient and their family to learn their story. The patient I chose, a 7-year-old-boy named “Tom,” had been admitted three days earlier for acute disseminated encephalomyelitis (ADEM). Despite the nurse’s warning, my professors encouraged me to take on the challenge, which proved to be very memorable.
Entering the room, I sensed a palpable heaviness. With kind but exhausted eyes, Tom’s father patiently answered the questions I stumbled through, while his wife, understandably frustrated, sat in the corner scrolling through her phone. Tom, nearly paralyzed, stared wide-eyed and drooling. This image sent a pang of sadness through me, and I wondered how his parents remained so composed.
“I can’t imagine how difficult this must be for you. How are you holding up?” I asked.
With this, Tom’s father laughed and looked at his wife, who rolled her eyes and said, “I’m sure I’m not the most popular among you staff members.” Not knowing how to respond, I gave her my attempt at a gently questioning look, at which she opened up about the interaction with the resident.
“I am so tired of hearing how ‘cool’ my child’s case is. I am broken, and all anyone can focus on is how ‘cool’ it is. I just lost it.”
Indeed, ADEM is relatively rare, with an estimated incidence of 0.07 to 0.9 per 100,000 children per year. Thus, non-specialized clinicians and trainees may see few to no cases, making it a “cool” thing to experience. But in this moment, looking into Tom’s mother’s eyes, I saw my own parents. I saw the way my mother’s neck would flush crimson red when yet another doctor commented how “very interesting” my lupus was, presenting at a young age with rare features. I saw the look of exhaustion my father had weeks into a hospitalization, craving a moment of solace, but instead being faced by countless bright-eyed trainees, fascinated with my plight. While it is natural as learners and clinicians to feel intrigued by rare presentations, we should pause before expressing this to patients. No patient or family wants to hear how “cool” we find their worst moments. Not one.
However, sensitivity in the way we speak about illness shouldn’t be isolated to the bedside. Throughout my time in preclinical medical education, I have often found myself questioning the language used to inform our learning and patient care as future physicians.
“Do you know why we call it cisplatin?” A guest lecturer asked my class during our discussion of the role of antiemetics in cancer treatment. “Because the vomit splatters against the wall with this drug. It’s that powerful.” She then went into the appropriate antiemetic regimen, but it was what she said next that struck me.
“I don’t know about you, but I don’t like puke. So, we give these drugs because we don’t want the patient puking on us. And your nurses and pharmacists, they don’t want the patient puking on them either.”
Stunned, I looked around the room to see if any of my classmates had been as impacted by this statement as I was, yet no one seemed off-kilter. Even discussing this with friends after class, none admitted that it caught their attention. Understandably, the purpose was to cement the importance of antiemetics. After all, certainly no one wants to be vomited on; however, this is not, or at least, should not be the reason we give them. The moment we take the focus off our patient — in this case a miserably nauseated cancer patient — and instead shift it to ourselves, we are in the wrong. We have become the problem.
Another moment that stands out in my mind took place during our rheumatology block, in which lupus jokes, references, and memes were a dime a dozen. When we finally got to the lupus lecture, the phrase “yay lupus” was said repeatedly. As a lupus patient, I am undoubtedly more attuned to these comments. Yet, in this instance, I had several peers approach me to check in; as future physicians but also friends, they too had felt that such comments trivialized a very serious disease. While these subtle comments no longer bother me, they can be harmful when spoken in the presence of those under our care. In fact, in a study by Lown et al., only half of patient respondents felt they generally received compassionate care. This large disparity worsens patient-physician relationships and overall health outcomes, leaving lasting negative impacts.
As a patient-learner, I am used to hearing these phrases, whether it be in class or at my own appointments. I am used to being called a “cool,” “interesting,” or any iteration of such, case. In fact, I too have felt this way when hearing a heart murmur for the first time or learning about life-saving CAR-T cell therapy. I think it’s appropriate, and even good, to feel excited or invigorated about our patients and their disease processes, but I do believe that there is room for more awareness around the language we craft when discussing and especially teaching these things.
I had a swim coach who used to say “practice makes permanent.” Thus, the attitudes and phrases we learn during our medical education and frequently use with colleagues can easily spill into patient care and cause harm. Being mindful of the language we use is a small change yet has a rippling impact.
I often think back to Tom’s parents — his father’s quiet steadiness, his mother’s raw honesty — and the connection we made through shared understanding. In that moment, what they needed was not fascination but compassion. As a fourth-year medical student at the cusp of my intern year, my goal is to always meet families with a presence that says, I see your pain, and I am here with you.
Sydney Karre is a fourth-year medical student at Wake Forest University School of Medicine. All names and identifying information have been modified to protect patient privacy.
Illustration by Jennifer Bogartz
