Early in my career I was consulted for Emmy, a 6-week-old baby in the pediatric intensive care unit. Emmy had a genetic condition requiring a breathing tube and ventilator to support her lungs. The next step was surgery to place a tracheostomy tube in her neck and airway to allow for long-term breathing support. Her parents were overwhelmed, exhausted, terrified, and visibly in conflict as to how to proceed.
Years later, Emmy's family came to see me for a routine tracheostomy follow-up. As I walked into the clinic room, I heard Emmy's mother slap her grandmother's arm, saying "Mom! She's the doctor who told us we would 'own the trach.'" I looked up puzzled. She explained how the conversation we had outside of the ICU all those years ago turned the course for them. Those words "own the trach" inspired them not to fear their daughter's tube but to master it—it helped shift their perspective and empowered them to reframe their role in Emmy's care.
Image caption: Emmy, age 6, in an August 2015 photo
I am a surgeon and a scientist. I research how surgeons, patients, and families talk with each other, and how that communication impacts treatment decisions and health outcomes. You likely have considered surgery for yourself or a relative or a partner. Sometimes the choice is clear; fix a broken arm or remove an infected appendix. More often surgery is elective—a tonsillectomy for your child, a hip replacement for your spouse, cataract repair for your aging parent.
My research shows that how surgeons and patients communicate with each other shapes the decisions people ultimately make. Ideally someone leaves a surgical consult understanding their condition and options, trusting the surgeon, and feeling respected, heard, and confident in their choice. Less ideally they walk away uncertain, confused, intimidated, or even choosing to have surgery they didn't truly need.
This research is at risk.
Proposed NIH funding cuts will weaken the infrastructure that makes surgical innovation research like mine possible, threatening not just our ability to develop new devices and approaches, but our chance to meaningfully improve how surgical care is delivered, communicated, and appropriately used.
These changes threaten resources which provide essential support for our study ethics, data security, and team collaborations. The cuts will ultimately (and quickly) reduce funding overall and shift priorities away from research that improves health care delivery. The NIH cuts also threaten support for mentees, students, and trainees who engage in this research and become the next generation of surgeons.
This research is not just about treating illness and avoiding complications. It's about making sure we're using surgery wisely. Effective communication between surgeons and families helps us get this balance right. When we analyze surgical consults and interviews with patients, we identify subtle, immediate communication behaviors that can meaningfully improve patient understanding, build trust, and lead to better decision-making.
A single conversation helped Emmy's parents navigate an overwhelming decision. Those conversations happen countless times in a day. With NIH support, we can use them to empower and engage our patients.
Emily Boss is director of pediatric otolaryngology and a professor of otolaryngology, pediatrics, and health policy and management at the Johns Hopkins University School of Medicine and Johns Hopkins Bloomberg School of Public Health. Her research focuses on patient and family-centered communication, health disparities, and surgical utilization and outcomes. She is also among the inaugural cohort of the university's Provost's Fellows for Public Engagement, a group of scholars selected to take part in a yearlong program designed to build their public engagement skills across a range of platforms and audiences.
