From tragedy to advocacy

This is the first part of a two-part series on the impact of patient-safety advocates. Part two of the series, which will appear in an upcoming issue, will look at how the advocates' work affected the specific providers involved.

Dale Ann Micalizzi is a quiet woman, but nonetheless determined as she relates the story of her journey from mother to patient-safety advocate. Her voice shakes slightly—she has told this story hundreds of times, but time cannot erase the memories of those moments in the hospital, as she watched her healthy 11-year-old son Justin die, the result of errors and complications that, to this day, she cannot understand.

It has been eight years since her son's death, after a procedure at St. Peter's Hospital, in Albany, N.Y., to drain his septic ankle, and soft-spoken as she is, the Schenectady, N.Y., woman has transformed her grief into a fiery ambition to ensure that hospitals take notice of her story, make changes and, above all, ensure nothing like what she and her family endured ever happens again. It has been a heartwarming journey at times—for example, when medical students are awarded scholarships from her foundation, Justin's Hope—and she is excited to think that those in the healthcare profession want to learn and to do the right thing by their patients.

And it has been heartbreaking at other times, Micalizzi says, especially when she speaks in front of doctors who don't want to hear they are less than perfect and that the health system failed her son. Or when she realizes anew that she still hasn't learned the whole truth of how her son died. “Even to this day, it's a day-to-day thing,” she said. “I'm still hoping for that day of more answers.”

Micalizzi's story is one of several that resonate across the country. Despite all being different and wrenching in their own way, the stories carry the same theme: a crisis, a tragedy, then a barricade of silence from the hospital and, often, a tumultuous legal battle. Micalizzi and others like her have formed an informal army, one that is perhaps better equipped to force change among hospitals than hospitals themselves are.

Patient-safety advocates are a fundamental part of system improvement, said Mark Novotny, a physician who is interim CEO of 99-bed Southwestern Vermont Medical Center, Bennington, which asked for Micalizzi's help after hearing her speak at an Institute for Healthcare Improvement forum. “A lot of healthcare is designed around those of us providing the care,” he said. “How can you possibly understand what patients want if they're not in the room?”

Medical errors and patient harm have led to providers and families taking “sides” in battles, when advocates say what the process needs is an injection of compassion and communication. Because, ultimately, the goal for both providers and patients is the same: successful outcomes and healthy people.

That is the message Micalizzi repeats in her speaking engagements when she describes how her son died. She still doesn't have all the details surrounding the event, but an emergency sent Justin to the pediatrics intensive-care unit after the procedure, and a few depositions revealed it was a resident that did Justin's surgery, not the surgeon. The discovery interviews also showed evidence that an anesthesiologist lied when he said that her son was awake during the emergency transport, when he was actually in a coma. Besides this, Micalizzi said she doesn't know how he died.

But she has made an impact. Her story has been told in a research paper about the importance of providers apologizing for medical errors. She sits on the board of the Malignant Hyperthermia Association of the U.S. The IHI supports the Justin's Hope scholarship program. And the full disclosure policy at Southwestern Vermont Medical Center was written with her help, and she teaches there as well.

Micalizzi is not alone in her efforts. Advocates have infiltrated every level of the healthcare system, from sitting on the Joint Commission's board of directors to helping develop the quality measures endorsed by the National Quality Forum. But where the work still needs to be done, they say, is at the individual hospital and doctor level.

In a way, the healthcare system itself has created these advocates. And yet, without their influence, changes might not happen, said Paul Schyve, a physician and senior vice president at the Joint Commission. Increasingly, the advocates' perspectives on how errors are managed are being listened to, Schyve said. Providers are realizing that patients and their families have a role in their care, and their stories are being told to help inspire improvements. There is “clearly a much better appreciation” for that role, he said. But “that appreciation is not universal,” he said.

In the last decade, there has been a grass-roots swelling of patients and families demanding a stronger role in healthcare reform and quality improvements. That is not a coincidence: 10 years ago, the Institute of Medicine released its landmark To Err is Human report and, hospitals suddenly found a spotlight shining on their practices. Although medical errors were happening before 1999, there was a lot more awareness of them after the report, said Helen Haskell, another advocate thrust into the role as a result of medical complications. Perhaps a testament to the level at which safety advocates are being recognized as real players in the system, Haskell, of Columbia, S.C., was named this year to Modern Healthcare's 100 Most Powerful People in Healthcare.

Haskell's 15-year-old healthy son Lewis Blackman died in 2000. According to her research, the pain medication he was prescribed following an elective surgery at MUSC Medical Center, Charleston, caused an ulcer that went unnoticed, and medical staff dismissed his parents' concerns, saying the distress was caused by gas pain. Haskell has gone on to help draft and pass legislation named after her son that requires clear job descriptions on name tags for medical personnel in South Carolina. Her organization, Mothers Against Medical Error, helped pass hospital infection disclosure legislation, and Haskell works with safety organizations in Chicago on creating disclosure models that can be implemented in hospitals.

The power of an apology is huge, said Haskell, who received one from the surgeon in her son's case. “We were treated very gently.” But a lack of education remains. Despite gathering a number of healthcare professionals in the past five years who agree to the need for transparency, “there's no learning,” she said. “I hear this over and over, the same mistake.” The Institute for Patient Safety Excellence at the University of Illinois at Chicago is launching a video series this month, starting with Haskell's story, as part of its educational effort to promote learning from medical errors among providers.

The system needs fundamental restructuring, “and that is the problem no one's willing to take on,” Haskell said.

Still, the pathways that have been created are making a difference, according to Rick Foster, a physician who is senior vice president of quality and patient safety with the South Carolina Hospital Association. The organization meets quarterly with advocates in the state to discuss quality initiatives, what's working and what's on the horizon, and it encourages hospitals in the state to bring advocates onto committees and boards, and to listen to their stories. “We try to make that emotional connection first,” he said. It reduces the adversarial roles that come through the legal fights.

The IHI encourages hospitals to bridge that emotional gap as well. Everyone knows the statistics—the 98,000 deaths per year from errors, the data in their own facilities—but “nothing builds will more than meeting the patients,” said Jim Conway, IHI senior vice president. “Errors don't erode trust. The way we act after the errors does.”

There are, typically, three things that families who become safety advocates want from the healthcare industry: an acknowledgment of the error; the reassurance that the hospital will do anything in its power to ensure the same mistake doesn't happen to another person; and the opportunity to participate in that process.

Susan Sheridan, of Eagle, Idaho, takes that last desire especially close to heart. Sheridan said her research shows that her newborn son Cal suffered irreparable brain damage known as kernicterus in 1995 because his doctors failed to recognize the neonatal jaundice symptoms in time. While Sheridan and her husband were involved in a lawsuit with St. Luke's Boise Medical Center and doctors over their son, a malignant tumor in her husband's back was found but erroneously diagnosed at St. Joseph's Hospital, Phoenix, she said, and he died of spinal cancer soon after in 2002. (All the cases in this story have since been settled with the respective hospitals.)

There is no doubting the steel in Sheridan's backbone, tempered by years of research, networking and persistence to reach healthcare officials and change the system. A Joint Commission Sentinel Event Alert about kernicterus was released, and there are kernicterus-specific quality standards that have been endorsed by the NQF in part because of her efforts. Through the group she helped to found, Consumers Advancing Patient Safety, she is taking on diagnostic errors and miscommunication the way she and her other group—Parents of Infants and Children with Kernicterus—took on that condition, to create a specific plan of action for healthcare organizations to follow that would lead to a reduction in failure to communicate critical test results.

It is, Sheridan said, a promise she made to her husband, whose last words to her were: “Don't give up on patient safety.”

Sheridan also was named to Modern Healthcare's 100 Most Powerful People in Healthcare list this year.

Despite the confidence Sheridan exudes, her voice still catches when she thinks about the results of her legal battles. While the hospital that treated Cal now has a jaundice-management program, “there's a wall between us,” Sheridan said. After litigation, they came out enemies, an outcome she never wanted. “People would say my family won, and there is no winning in the tort system.”

With the hospital and physicians that she believes misdiagnosed her husband, there is slightly more progress now, seven years after her husband's death, she added. “We are re-energizing that relationship” cautiously, she said.

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