One Hundred Days: What Language Taught Me About Pediatric Care

Around the country this week, kids will dress up for the 100 Days of School celebration. 

Rona had big plans for that celebration in 2023. For her first Halloween, we had dressed Rona up as a crazy cat lady (her father and I were each cats), so we knew how to make the wig and had the glasses to sell the look on hand.

The weekend before spirit week kicked off, Rona developed a high fever and was admitted to the hospital for the first of six times before our admission for transplant. She was pretty out of it for a few days between doses of fever suppressant, strong antibiotics, and providers’ herculean efforts to manage her cell counts, as we realized the infection she was battling had taken out her red and white cells (we had already lost her platelets the month before).

On February 13th – the 100th day of school – in the very public setting of rounds, we learned that Rona would need a transplant. The first line medications were not working. 

Instead of our five-year-old dressing up like the 100-year-old all parents hope their child will one day be, we spent the day learning about the 100 days of isolation we would spend post transplant, and the risks that might arise during that time. 

A little less than 100 days later, Rona received her first of three transplants. She died 130 days after that.

I think about that day in February a lot. It was the moment that marked the shift in our journey: In 24 hours we went from “this is moderate, so we don’t need to talk about five year survival” to having a provider explain there was a 100% chance my child would not be alive in six months without a treatment that had a 10-20% chance of failure. Nothing can prepare you for that conversation.

More than anything, that was the day that I began to really understand the importance of nuance in health communication – one of the six principles for pediatric care encompassed in the FUN LAB framework. 

Rona was treated in a teaching hospital, which means the worst moments of my life were witnessed by a small army of strangers, many of whom did not have the capacity or training to navigate those moments well. Tired medical students would roll their eyes when we corrected their inaccuracies about her status during rounds, we had to explain to one resident why laughing about a non-existent neutrophil count is not in any way appropriate in a transplant unit, and to clarify to an attending that our concerns about Rona’s status were about her chances of survival, not just the likelihood of a successful engraftment. “Oh,” the provider said the week before she died, “That doesn’t look as good.”

What I did not have language for in those moments but have since come to understand, is that what happened during Rona’s treatment aligns closely with what communication science tells us about how people process life-altering information. Research across healthcare settings shows that language used during high-stress clinical encounters shapes not only comprehension, but emotional processing, trust, and long-term memory [1-3]. In moments of acute uncertainty, people anchor meaning to specific phrases, labels, and metaphors. These words become the framework through which the experience is later recalled.

In pediatrics, this effect is magnified. Studies consistently show that when families are reduced to diagnoses or prognostic shorthand, it reinforces powerlessness at precisely the moment when autonomy is most fragile. Person-first language — describing an individual as a person living with a condition rather than defining them by it — has been associated with higher trust, stronger therapeutic alliance, and greater engagement in care [4-6]. Conversely, dehumanizing or overly technical language is linked to increased distress, poorer adherence, and lasting negative perceptions of care [7-8]. Research on prognostic communication further shows that families prefer clear, direct language over euphemism, even when the truth is devastating, because clarity allows them to make meaning in real time rather than reconstruct it later [9-11].

What I remember most from our 100 day conversation is not the statistics or the treatment plan, but the words: “Just because she’s being nominated to Make-A-Wish, does not mean she will die.” “For every ten kids that I transplant, two will not leave the hospital.” “Rona is a five-year-old with Aplastic Anemia, a condition harder to treat and more rare than B-cell lymphoma. First line treatments have failed. This morning she was recommended for transplant.” 

The language used did not just convey information, it shaped how that day lives in my memory. The evidence tells us this is not incidental. Words do not merely describe care. They shape how it is experienced – and how it is remembered.

References

[1] Kelly, M., et al. Language and stigma in healthcare. BMJ.

[2] Street, R. L., Makoul, G., Arora, N. K., & Epstein, R. M. How does communication heal? Pathways linking clinician–patient communication to health outcomes. Social Science & Medicine.

[3] Levinson, W., Lesser, C. S., & Epstein, R. M. Developing physician communication skills for patient-centered care. JAMA.

[4] CDC & HIV/AIDS Advocacy Literature. Origins and impact of person-first language in healthcare.

[5] Dunn, D. S., & Andrews, E. E. Person-first and identity-first language: Developing psychologists’ cultural competence. American Psychologist.

[6] Kelly, J. F., Wakeman, S. E., & Saitz, R. Stop talking ‘dirty’: Clinicians, language, and quality of care. Substance Abuse.

[7] Zolnierek, K. B. H., & DiMatteo, M. R. Physician communication and patient adherence to treatment. Medical Care.

[8] Haidet, P., & Paterniti, D. A. “Building” a history rather than “taking” one. Academic Medicine.

[9] Mack, J. W., et al. Euphemisms in prognostic communication and their impact on parental understanding. Journal of Palliative Medicine.

[10] Wolfe, J., et al. Parents’ preferences for communication at the end of life for children with cancer. New England Journal of Medicine.

[11] Mayo Clinic Proceedings Editorial Board. Language at the end of life: Why words matter. Mayo Clinic Proceedings, 2024.