Healthcare workers often gauge the quality of care that they give based on clinical outcomes and things that can be quantitatively measured. Patients, however, often form their initial impressions based on how responsive a facility or doctor is to a patients’ needs. Things such as accessibility, timely care, quality interactions with staff and whether a person feels heard and respected all add up to make a big difference in the patient experience.
Before the age of social media, an experience (good or bad) might be relayed to a handful of family members or one or two friends over coffee. That same experience today can reach hundreds of people instantaneously with a few keystrokes, a click or a Tweet. Good press, bad press, it all travels fast. Positive patient experiences travel even faster.
My patient experience started with a routine eye appointment on a Wednesday. My 19-year-old son was leaving for a semester in Germany in a matter of days. Our last two weeks had been filled with the mundane shopping, banking and doctor appointments necessary for a European adventure. A dilation and new contact lenses were all that stood between my son and his Wienerschnitzel. But this appointment quickly diverged from a typical eye exam. Tests showed that my son’s optic nerves were very swollen and his corneas were extremely thinned. Those findings and his visual field tests indicated that he had a potentially serious issue going on. We were referred immediately to an ophthalmology specialist at a major medical center.
After hours of testing the specialist told us that he thought my son’s situation was a bit worse than the initial findings indicated. There was no way to confirm what was causing my son’s optic nerves to swell, and in some cases, to be missing altogether.
The specialist suggested it might be a degenerative brain disease or possibly, glaucoma. He said we needed to see a Neuro Ophthalmologist but the wait at the medical center for that particular specialty could be three to four months or longer.
As we reeled from this information, my son shakily asked about his trip to Germany. Could he still go? The specialist said, “Yes”, which surprised me. He said that we could consider seeking follow up treatment and testing in Germany, saying that there was really nothing more we could do here but to wait. He went on to explain that the degenerative brain disease he thought my son might have didn’t necessarily have a treatment anyway.
With those words, my son and I felt very scared and vulnerable. I wasn’t about to let my 19-year-old kid go to Europe and attempt to navigate a potentially devastating diagnosis in a foreign country. And all the while, the running monologue in my head consisted of only three words, smashing me like a hammer—degenerative brain disease. Degenerative brain disease. Degenerative brain disease. We didn’t feel like we could wait a few days with this uncertainty and terror, much-less a few months.
It all felt so hopeless. I started to go through something similar to the stages of grief. There was the initial shock and pain and then the bargaining and the guilt phase briefly took hold. Next, I quickly moved to a stage that we mothers like to call “I need to kick some ass.” I started to brainstorm and work through the problem at hand. I planted myself at the hospital and began to talk to people at the appointment desk about my son. Their initial response and uncomfortable gazes indicated that a four month delay was not magically morphing into an immediate appointment. A person at the appointment desk said that seeing someone that quickly, in that specialty, was just not possible. Yet, I could see the Neuro-Ophthalmology department not ten feet from where I stood, and it inspired me to continue advocating for my son. By the time I left the hospital, I had told every staff member who would listen about my son’s situation.
Within a few hours, I had left our information at more than a few desks; I had spoken about our plight on Facebook and talked to family and a few close friends.
I was desperately networking and hoping for someone to hear me, see the fear in me, and agree to see my son. We left the hospital reluctantly.
An hour after arriving home, the phone rang. It was the scheduling nurse at the Neuro-Ophthalmology department. They had received information about my son from someone, and wanted to know if we could bring him in for a consultation on Monday morning. She said they would do everything they could to get us the answers we needed so we could make an informed decision about my son’s health and study abroad trip. Since we were being worked in, we were told to plan to spend the entire day at the hospital. Through shocked tears, I told her “Gladly.” She gave me a thorough list of records they needed me to gather and deliver that afternoon. I quickly began my scavenger hunt.
Records in hand, it was a triumphant return when I walked inside the doors of the hospital later that same day. The Neuro-Opthalmologist, whose business card I had wistfully tucked into my back pocket earlier that morning, introduced herself to me, mentioning my son by name. No longer was my child a medical record number. He was a young man with a name and a terrified mother and family who loved him. We had gone from hopeless to human in less than 8 hours. The doctor took a few moments to let me know she had reviewed my son’s case, and she was hopeful that we could get some answers the following week. Patting my hand, she told me to try not to worry and that she would see us on Monday.
We anxiously arrived for our 8:30 a.m. appointment that next week ready for answers. More than one doctor representing different specialties tended to my son that day. I didn’t hesitate to tell each and every person how much it meant to us. I hoped that if someone stopped them in the hall and asked “Tell me one thing you did today that made a difference?” they would tell them about our family and my son. In the waiting room, a patient commented that the doctors seemed to be running a little bit behind that day. I apologized and admitted the delay was likely because of us.
I explained to a roomful of people what the hospital team had done for us and my nervous teen sitting beside me. A woman cried and hugged me and my son. She gave me her phone number telling us she wanted to hear the outcome of the tests.
Another patient in the waiting room encouraged my son with tales of his time spent living in Germany. They understood, in that moment, how real we were. We weren’t just a delay, holding up the schedule. They knew now that the hospital staff saw and heard us. They truly understood and appreciated that when their appointment time came they would be seen and heard as well.
Too often we minimize the importance of small gestures that take place throughout our day. I’m still unsure exactly who it was, but someone at the hospital made a quick decision and said to herself and the team “let’s see what we can do to get this kid an appointment.” And they did. They decided to toss aside the word “No” and choose “Yes.” Yes, we can rearrange our schedule. Yes, we will make your son and your family a priority. Yes, you matter.
By days end we received relatively good news. An MRI showed what was thought to be a potential degenerative brain disease is likely a congenital defect, the result of my son’s premature birth. He does, unfortunately, have significant optic nerve swelling and damage, thinned corneas, and is a high glaucoma “suspect.” He will have to be closely watched and probably treated for the rest of his life. But the next morning, we were able to put him on a plane to Europe where he could process this health information while studying the intricacies of the European Union, eating Black Forest Cake and watching the snow fall.
That evening, I went to my Facebook page. I posted how grateful my family and I were to the hospital for rising above and beyond to get the answers we so desperately needed. I thanked the wonderful physicians who rearranged their day and workloads to accommodate us, and mentioned how rare and exceptional it is when human beings become more important than schedules and rules.
It takes about eight seconds to form a first impression. That’s about the time it took 708 of my Facebook friends to read my post.
A few days prior, my mind was filled with a pervasive fear and anxiety that permeated my sleep. But this hospital, on that particular day, chose to turn that around for my family giving us, ultimately, a perfect patient experience.