Almost 10 years ago, the healthcare industry found that it might not be as safe as it thought. It was then that the Institute of Medicine released To Err Is Human, which noted that each year a million or more hospitalized patients are injured and as many as 98,000 die as a result of errors in their care.
Numerous reports, testimonies, and articles have examined the issue, but one aspect seemed to be initially missing from the discussion: Real people and real faces behind the statistics. Several years ago, this point was driven home as a Maryland mother, Sorrel King, began to speak to audiences of medical professionals across the country about how her 18-month daughter died in a hospital after a series of medical errors.
But King didn't want Josie just to be a number: She wanted to know how to prevent other families from experiencing the same tragic events. In a way, it became the beginning of her own movement to make patients safer through new ways of thinking and communicating, which she now recounts in her new book, Josie's Story: A Mother's Inspiring Crusade to Make Medical Care Safe.
In the winter of 2001, Little Josie was within two days of going home—making a good recovery. But through a series of miscommunications, she began to deteriorate. As King describes it, her daughter's color seemed off—she seemed lethargic and extremely thirsty.
At first, she shrugged it off. After all, she thought, the child was at one of the premier hospitals in the country, Johns Hopkins Hospital in Baltimore. "I always tried to be a low-maintenance parent. I didn't want to get into anyone's way. I didn't want to ask questions," she said. "I just wanted to take care of Josie."
Through a communications breakdown, the child was administered a shot a methadone, which ultimately put her into cardiac arrest. She was rushed to the pediatric ICU where her organs began to shut down. The next day, King and her husband made the decision to take her off life support. "So, instead of planning a welcome-home celebration, we were planning a funeral," she said.
Eventually, the Kings reluctantly agreed to a financial settlement with Hopkins. "We didn't want the money. We thought that taking the money was almost as disgusting as offering up money for her life," King said. Their lawyer said that while they could leave the money, nothing good would come from it.
So they began to think what could they do for Josie—and the impetus for the Josie King Foundation was formed "with a simple little mission: To prevent children and patients from being harmed by medical errors."
First place to start: Johns Hopkins. "I wanted every doctor, every hospital to know what happened. To be honest, I wanted to do it out of spite," she said. "But then I realized that the story could transform doctors and nurses maybe—and how they listened to patients."
Helping her on her journey was Peter Pronovost, MD, PhD, a professor at Hopkins and medical director of its Center for Innovations in Quality Patient Care, who also found himself embarking on a new journey as well on the issue of medical errors.
"Josie's death was a tragic loss for all of us—obviously most important her parents. But it forced Hopkins and now I think the broader medical community to address this important issue of medical errors in a very real and concrete way," said Pronovost, who is also director of Hopkins' Quality and Safety Research Group.
"Prior to her efforts—including here [at Hopkins]—we didn't talk about mistakes too much. Doctors were expected to be perfect. If something went wrong, it was under the rug," he said.
King took the challenge, and started by talking groups of medical professionals at Hopkins. She met with residents who were unfamiliar with the Institute of Medicine findings on patient safety. Pronovost encouraged her to take her message to even bigger audiences, such as those attending meetings of the Institute of Healthcare Improvement.
In her message, she tells her audiences that she is not a physician or nurse and she has no medical background. "What I do tell them is what I see and what I saw and what I think they could fix," she said. And that the way to address many patient safety issues is "something as simple as communication."
But beyond just telling her story, King has seen new ideas implemented from her experiences—most notably the use of "Condition H" (where "H" stands for "help") in hospitals across the country. Condition H, which is discussed further in this month's issue of HealthLeaders magazine, encourages patients and/or families to dial a special number during hospitalizations that alerts a rapid response team to assist if a medical emergency is perceived. The program, which started at a University of Pittsburgh Medical Center hospital in 2005, is now being used nationwide.
The foundation has also implemented a family care journal project. A number of hospitals across the country are giving the journals to hospitalized patients and their families so they can monitor day-to-day activities—from daily goals to names of medications to the names of their medical team members. The journal can be seen as "a symbol of the hospital reaching out to the patient and saying: ask questions," King said.
"I think that she's touched the healthcare community in a way that few others have been able to," Pronovost said of King. "I go around the country and [I know] that there are thousands of hospitals that show [the recording] of King talking about Josie.
"But one of the pleas I make to hospitals—and I say this to senior leaders—is that we will know we're starting to make progress in safety when they have the courage to tell their own Josie story," Pronovost said. "It's easy to say this is what Hopkins did, and it's meaningful for staff and leadership.
"But [stories like] Josie's are happening at hospitals all over the country. What was transformative for Hopkins was that we accepted responsibility," he said. "It can't be just a Hopkins' story: It's got to be whatever hospital you're at—[to say] 'we own it now.'"