We All Win When Patients Speak Up: A Conversation With Patient Advocate Lisa Rodebaugh; Executive Director of the Patient Safety Authority (PSA), Regina Hoffman; and PSA director of Engagement, Caitlyn Allen.

Abstract

Lisa Rodebaugh: My husband, Bill, and I can rattle off our stories in two minutes or less—stories from having five children, each with varying medical and developmental needs that presented far differently from what specialists typically see. Each required those who knew them best asking questions to get them the right help at the right time. We tell the stories often, to encourage those listening to always ask the questions. We tell the stories often, because self-advocacy matters. Sometimes it is the difference between life and death.

My oldest son, now 21, was 6 months old and kept running a low-grade fever. I diligently called the pediatrician when it began and called again when it did not go away after 10 days. The doctor was convinced there was nothing to worry about: most likely he just had two different colds, and there was no way the fever would last long.

Three weeks later and with my son still running a fever, I called again insisting we be seen. They agreed to see us—after giving me the “new mom chat,” an assurance that everything was probably fine and a request to not worry so much.

Thankfully, they sent us for lab work, because by this point, my son was in septic shock. We spent the next few days in the hospital. He recovered, and I was equipped with information and the confidence to never stop asking questions.

One year later, my second child was born with a condition called hypoplastic left heart syndrome (HLHS), a congenital condition (something you’re born with) that affects blood flow through the heart. His first of three open-heart surgeries happened when he was just 8 days old. Two months later, I noticed his chest looked buff, like a little Arnold Schwarzenegger. The cardiologist humored me with a visit, only because we were in the precarious time between our son’s surgeries. Again, I got that “do not worry so much” chat.

Immediately following an echocardiogram, our infant son was rushed into the cardiac cath lab to unblock a critical opening between his heart chambers that had unexpectedly closed with scar tissue. Once again, the life of one of my children was saved by asking questions and being persistent.

Those are the most dramatic stories. However, there are countless more in my two decades of parenting that have made me never regret following my gut—parental intuition is real and can be lifesaving. Advocating for my children forced me to step outside my comfort zone. Often, I had to question what someone with specific training in that specialty was telling me. Often, I had to keep pressing because I knew something was wrong.

In the 20 years since To Err is Human was published, we have come a long way in having a patient’s or caregiver’s voice validated, but this is an area where we can continue to grow and evolve. I try not to think what would have happened had I shrunk in my corner as a new mom, not knowing how very critical my observations were.
Trust your instincts. Ask questions.