Tiffany Gwilliam: My seven-year-old daughter woke up one night yelling and crying in pain. Her knee was swollen and stiff. The next morning, we were in the pediatrician’s office. After more testing, my baby was diagnosed with juvenile idiopathic arthritis, a chronic autoimmune disease that could cause disability. We were referred to see a pediatric rheumatologist at a local children’s hospital.
As a frightened, overwhelmed mother, my initial thoughts were, “Is this really happening?” “What does this all mean?” “What is the future health of my baby?” I was terrified and anxious. I took my daughter to meet the specialist, fearing the worst. This was my most vulnerable moment as a mother. I was still in a state of shock and denial.
Paul Rosen, MD: A routine day at the office for me could be the worst day of a parent’s life. There are only 300 pediatric rheumatologists in the U.S., and parents often drive two hours, miss work, and take their child out of school just to see us. As a result, I am very conscious not to add more stress to the office visit by keeping families waiting. My template is designed so that I run office hours on time.
Tiffany: This is one of my hardest days as a mother. I do my best to comfort my daughter despite being in a terrible emotional state. I have to fake it. My heart is beating out of my chest. Fear is consuming me. I just want answers. I hope the doctor will put my mind at ease.
Paul: We are told that 75% of doctors forget to properly introduce themselves, which can set the wrong tone for the whole visit. When I walk into the examination room, I try to follow the best practices for the intro: big smile and friendly greeting; state my name, specialty, and years of experience; shake hands, greet everyone in the room (especially the child and siblings), and then sit down and make eye contact.
I tell the family what we will do during the visit. Since the worst fear at the doctor’s office for many children is a needle stick, I reassure the child that we have no needles in the room. (If blood work is needed, we apply numbing cream before the child goes to the lab.)
There are parts of the visit where I am looking face-to-face at the parent and at the child. At other moments, I am typing my notes, orders, and billing into the computer. When I am discussing diagnosis, treatment plan, and follow-up, I am looking at the family, not the computer.
Tiffany: Dr. Rosen is warm and genuine. He talked directly to my child, which made me feel more secure. His physical exam was thorough. He charted his note in the room, which did not bother me. We discussed the diagnosis and various treatment options. There is a lot to process. Dr. Rosen told us not to rush into a decision and to take some time to think about the treatment plan. He even provided his personal cell number and email. I leave emotionally drained, but reassured by the visit.
Paul: All families think of questions after the office visit. A question that lingers unanswered, even for a few hours, can perpetuate fear. I give my patients my email and cell phone number and encourage them to contact me with any concerns. Most do not, but I want families to know I care about their needs and am available for them.
Tiffany: We decide on a treatment plan, and my daughter responds. No more joint pain or swelling. She is back on the soccer field with a vengeance. I trust my doctor. He was there for me via text, email, phone, and in the office when I needed to connect during the rough times. My worries have subsided. Life is changed, but we are establishing a new normal. I am feeling deep gratitude for the care my daughter is receiving. I am comforted knowing we are fortunate to be in the best hands, receiving the best care possible.
Paul: Not every doctor is the right match for every patient, for whatever reason. The patient-physician relationship is too important to be left to chance. Nemours Children’s Health System market research shows that parents want to read crowdsourced reviews before picking a doctor. Other surveys demonstrate that consumers value a doctor’s caring, listening, and respectfulness even more than medical judgment.
The transparency of consumer-rated reviews for products and services that one sees on Amazon, TripAdvisor, Product Hunt, and Yelp has now come to health care. Health systems such as University of Utah Health Care, Cleveland Clinic, and Geisinger Health System post patient-rated scores and comments for doctors. Nemours Children’s own service data will be posted later this year on Nemours.org.
Tiffany: When my daughter’s condition stabilized, I began looking for ways to give back and help other families who were going through similar experiences. Dr. Rosen suggested I get involved with the Arthritis Foundation. Together we have raised thousands of dollars for arthritis research. We also created a local event to help support families dealing with juvenile arthritis.
I told my daughter’s story on Dr. Rosen’s podcast. Our story of building a trusting patient-physician relationship even got the attention of SiriusXM Radio. We were interviewed together on the Wharton Business Channel for their “business of health care” show on patient experience.
Paul: Once Tiffany’s daughter’s condition was under control, I knew that I could ask Tiffany to do more for the arthritis community. It is great to have a parent as a partner to offer insight on the family experience and to help other families. We hope that we can model what a great patient-physician relationship can be. The joy of practicing medicine must be restored for all doctors. Working closely with parents like Tiffany is what it is all about.