It's More than Just the Science: Patient Safety Can Be Life or Death

Wednesday, February 15, 2017

“It wasn’t the cancer that killed her. It was medical errors.”

— Carole Hemmelgarn, Mother

Carole Hemmelgarn tells residents, medical school faculty, students, nurses — anyone who will listen at lectures and Grand Rounds — about the importance of patient safety.

To emphasize her message, she tells them the story of nine-year-old Alyssa. Back in 2007, Alyssa’s family went skiing, but the usually enthusiastic girl seemed lethargic. Her mother noticed her glands were swollen and her throat was sore.

“Her mom thought she had mono,” Carole tells her audiences.

Carole Hemmelgarn

But a trip to the pediatrician led to more tests, a diagnosis of leukemia and admission to a hospital.

Ten days later, Alyssa died.

“It wasn’t the cancer that killed her,” Carole said. “It was medical errors.”

Carole speaks to medical trainees and providers on behalf of Solutions for Patient Safety (SPS), a collaborative network that strives to create a learning environment to establish the best safety practices in patient care. The SPS network includes more than 100 children’s hospitals and thousands of pediatricians. The network monitors quality metrics and shares safety successes and failures, all to protect children from harm during treatment. The SPS network creates a connection between parents and medical staff contributing to standardization of practices. They report having saved nearly 6,700 children from serious harm between 2012 and May 2016. Pediatricians participating in the SPS network are eligible for MOC Part 4 credit for participation in the SPS patient safety initiatives.

The SPS network’s efforts help reassure parents about consistency of care among a continually revolving medical staff. Carole has shared her patient safety perspective to the ABP because of the ABP’s mission to assure the public that pediatricians meet high standards that include interpersonal and communications skills. She hopes to encourage the ABP to consider patient safety information in initial certification and maintenance of certification requirements.

Carole provided a powerful perspective on pediatric patient safety at the US News and World Report Healthcare of Tomorrow conference, held in November in Washington, DC.

“In health care, we typically want our physicians to be very knowledgeable, which is important,” she says. “But it’s more than just the science. It’s the human element that is so important to patients and families. It’s being able to communicate with us, but also with our children, having that bond when you come in the room.”

Alyssa Hemmelgarn

Poor communication was a significant problem leading to Alyssa’s death, Carole says.

Somehow, her medical team failed to realize that Alyssa had a severe hospital-acquired infection, known as C. diff. Critical lab reports went unnoticed, and the team did not respond appropriately and quickly, which lead to a classic case of failure to rescue. Her parents watched helplessly as Alyssa’s blood pressure dropped and her pulse raced. The next morning, Alyssa’s dad felt her foot — it was ice cold. Her mother asked for an attending and within minutes a code was called. Alyssa was rushed into intensive care, then into surgery.

“They brought her out of surgery and told her parents that Alyssa would not live,” Carole says. “They had to make the decision to let her go.”

It’s only then, near the end of her talk, that Carole explains: “Alyssa was my daughter. This tragedy is my family’s story.”

And then she begins to cry.

“I don’t want it to become rote. I want it to have impact. The residents won’t remember all the statistics and bullet points on my slides, but they will remember my story.”

This story was first published in the ABP's 2016 Annual Report.

2016 Annual Report (PDF)

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