How a teenager with seizures became the face of trauma-informed care

A teenage girl was found alone, having a seizure on a bench outside our clinic’s front door. She had never been inside our clinic, but it was our fault she was seizing.

The office manager from the dentist’s office upstairs found the girl as she returned from lunch. Not knowing what to do, she opened our clinic door and called for help. Our front office staff summoned the doctors from our clinic to assist. As we debated the next steps, whether to wait for the seizure to end or call 911 immediately, a staff member volunteered a crucial piece of the puzzle. He had noticed that the mother of one of our patients had been entering her son’s exam room every few minutes for the past 15 minutes, and he suspected she might be the seizing girl’s mother.

I went back inside and found this mother. Indeed, she was the mother of the seizing girl, and she was aware of her daughter’s condition. The girl had been experiencing seizures for about a year, and her mother explained that they only occurred when the girl ran or was overly active. Until then, her mother had allowed the seizures to run their course without seeking further assistance.

The mother had been bringing her younger son to our office for about six months since he acquired health insurance. They chose our clinic because, unlike other primary care settings, our pediatricians are trained to treat anxiety and depression. We follow best practices by scheduling regular follow-up appointments to monitor progress in therapy and adjust medication doses. The mother understood that for her son to receive proper treatment, she needed to bring him in for these regular check-ups. She was well aware of the challenges in finding someone to treat depression and was highly compliant with his appointments.

However, attending these appointments was not easy for her. The mother was homeless, living in a tent that she packed up every morning. The children lived with their father, who provided them with shelter and food, but their mother largely took care of their well-being. She would pick up her children and take the bus to our clinic. This explains why she often arrived an hour early for appointments, patiently waiting in our reception area.

On this particular day, the bus was delayed, so the mother called our office anxiously to inform us of her delay. At this critical juncture, everything could have turned out differently if our office staff had not uttered these few words: “If you’re more than 15 minutes late, we will need to reschedule.” While this statement seems reasonable and factual, we say it several times a day, equally to everyone who arrives late.

And so, they rushed from the bus. The daughter, with her untreated seizure disorder and lack of health insurance, and the mother who had effectively concealed her daughter’s condition from us for the past six months, revealed themselves that day.

Why had the mother never informed us about her daughter’s condition? Why didn’t she seek assistance in obtaining insurance? What if we had simply said, “Take your time. Our doctor will see you when you arrive?”

I have been grappling with our response when the mother called, but I have also been struggling with how to incorporate trauma-informed care into our pediatric practice. This incident shed light on our next steps.

Two years ago, we began implementing trauma-informed care by screening our patients for adverse childhood experiences during well-child visits using the PEARLS questionnaire. Our clinicians have undergone training on how to respond to our patients’ experiences. However, providing trauma-informed care goes beyond the doctor-patient interaction. This patient taught us that it encompasses every point of contact with a patient—the clinic’s location, how we answer the phone, the signs on our office walls, and even what is on the TV in our reception area. It requires a new approach to all our office policies and practices.

Currently, we have developed trauma-informed scripts for our office staff to use when scheduling patients. We have also embedded community health workers (CHWs) in 8 out of our 22 clinics, to whom we can refer patients who clearly have unmet needs, even if we are unsure what those needs are. Our CHWs are approachable, and had we had one at the time of this event, perhaps this mother would have sought insurance for her daughter. Additionally, we are using a risk-scoring tool that calculates a score for each patient and is listed next to their name on our schedules. The score takes into account diagnoses and social factors, providing all staff members with insights into which patients may require a little extra time or care that day.

Witnessing a child having a seizure on the front steps of my modern medical clinic was both humbling and horrifying. I wish things had unfolded differently, but this teenage girl now receives the care she needs. On that day, we called 911, and the girl was taken to the children’s hospital emergency department. She was subsequently admitted to the hospital, obtained medical insurance, and is now receiving treatment for her seizure disorder. I have also heard that the mother is no longer living in a tent but has secured an apartment, and the family is managing.

I share this story of a girl found alone, having a seizure on a bench, as an illustration of how and why we should all incorporate “trauma-informed” principles into our medical clinics.

Wendy L. Hunter is a pediatrician.

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