Every day, Rotterdam resident Dale Ann Micalizzi receives more than 100 e-mails and phone calls from distraught families who suspect something went wrong during their loved one’s medical care.
Micalizzi knows what that’s like.
In 2001, her 11-year-old son, Justin, died during a routine surgical procedure marred by errors and complications. In the years since, she has become an outspoken patient safety advocate, pushing hospitals to improve their quality of care and be open with patients and families if something goes wrong.
“I don’t want this to happen to somebody else,” said Micalizzi.
Today Micalizzi heads an organization, Justin’s HOPE, dedicated to improving pediatric health care. She regularly tells her story at conferences on patient safety and health care quality. Hospital CEOs contact her seeking advice on how to disclose medical errors to a grieving family; she tells them to “be open and honest and do it fairly.”
She also serves on the board of The SorryWorks! Coalition, an organization formed in 2005 that advocates for disclosure, apology and compensation after errors in medicine, business, insurance and the law. Along with her husband, Gary, she also leads a support group for parents whose children have died.
Micalizzi’s work is part of a broader movement that aims to bring more attention to the problem of preventable medical errors.
The movement is relatively new. But it’s grown significantly during the past decade, the result of advocacy by organizations such as the Cambridge, Mass., Institute for Healthcare Improvement, which was formed in 1991, and technological advances such as Facebook and e-mail that have made it easier for people like Micalizzi to connect with like-minded individuals and groups.
“We’re slowly having an impact,” Micalizzi said. “We’re kind of in our teenage years. We’re getting our ideas out there.”
Jim Conway, senior vice president at the Institute for Healthcare Improvement, agreed. “We’re hearing more about tragic errors, but we’re also seeing a much more dramatic engagement of consumers to change the system.” He called Micalizzi one of the movement’s “early pioneers. Dale has helped the conversation grow.”
A watershed moment in the patient safety movement was the release of a landmark report, titled “To Err is Human,” in 1999 by the Institute of Medicine.
The study found that between 44,000 and 98,000 people die in hospitals each year as a result of medical errors that could have been prevented. “Even using the lower estimate, preventable medical errors in hospitals exceed attributable deaths to such feared threats as motor vehicle wrecks, breast cancer and AIDS,” the report says.
The study lists some common medical errors: “adverse drug events and improper transfusions, surgical injuries and wrong-site surgery, suicides, restraint-related injuries or death, falls, burns, pressure ulcers and mistaken patient identities. High error rates with serious consequences are most likely to occur in intensive care units, operating rooms and emergency departments.
“Beyond their cost in human lives, preventable medical errors exact other significant tolls,” the report says. “They have been estimated to result in total costs [including the expense of additional care necessitated by the errors, lost income and household productivity, and disability] of between $17 billion and $29 billion per year in hospitals nationwide. Errors also are costly in terms of loss of trust in the health care system by patients and health professionals.”
Conway became IHI’s senior vice president four years ago, after serving as chief operations officer at the Dana-Farber Cancer Institute in Boston. At Dana-Farber, Conway worked to improve health care quality, meeting with people who had been victims of medical error and implementing reforms.
This effort was partly in response to the 1994 death of Boston Globe health columnist Betsy Lehman after a young doctor accidentally prescribed four times the intended dose of breast cancer medication.
Medical errors are far too common, Conway said. “If I give a talk, I ask the audience whether they or any of their family members have experienced a medical error in the past two years,” he said. “Between 30 to 50 percent of the hands go up. People are starting to understand that for all the good stuff that goes on in health care, there’s a lot of suffering and waste.”
Most mistakes are the result of bad systems, not bad people, Conway said. Too much information is still conveyed on “index cards and Post-It Notes,” rather than through computers. A lot of errors occur at “transfer points” — when a patient is being moved to a new location, such as a nursing home, or discharged. “We haven’t had good, reliable systems to ensure that handoff [is successful].” He said more transparency is needed. “Not that long ago, hospitals didn’t disclose medical errors,” he said. But that culture and fear of litigation is changing.
“What the Dana-Farber board learned is that we have a moral and ethical responsibility to disclose,” Conway said.
One of the people working for change is Kelly O’Connor, a graduate student at the School of Public Health at the University at Albany. A year ago, she founded an IHI chapter on campus. “It’s primarily targeted toward students in the health professions so that they can become agents of change in health care improvement,” O’Connor said.
She became interested in health care improvement while working as a clinical research coordinator at Dana-Farber, where she observed how medical errors get made first-hand. She said that sometimes patients would have blood drawn twice because it wasn’t done properly the first time. “I hated to see that.” Many of the system’s failures were the result of poor communication.
Through Justin’s HOPE, Micalizzi raises money for a scholarship that is awarded to caregivers who served the “underprivileged and underserved pediatric populations globally.” These scholarships cover the cost of attending an annual conference on quality improvement in health care sponsored by IHI.
Micalizzi said she knew something had gone wrong with Justin’s care almost immediately. But she didn’t know what, and explanations were not forthcoming.
“I just wanted people to sit down and talk to us.”
Justin was a healthy child. But one day he came home from school complaining of ankle pain and a slight temperature. The Micalizzis visited a pediatrician, who gave Justin medication. But the boy’s condition didn’t improve. He was nauseous. He vomited. That evening, his parents decided to take him to St. Peter’s Hospital to have his septic ankle drained. They were told the procedure would take about 10 minutes, but the wait was much longer. Finally, the orthopedic surgeon informed them that Justin had hemorrhaged and gone into cardiac arrest on the operating table. The boy was transported to the pediatric intensive care unit at Albany Medical Center, where he died.
Dissatisfied with St. Peter’s response to their questions, the Micalizzis eventually filed a lawsuit, hoping to learn what happened during the discovery process. “We weren’t interested in money,” Micalizzi said. “We didn’t want to retaliate. We just wanted answers.” In 2003, they dropped the case.
A state Department of Health investigation did yield some answers — a resident had performed Justin’s surgery, not, as they’d believed, a surgeon — but not enough. To this day, the Micalizzis still do not understand why Justin died.
“We still don’t know what caused it,” said Gary Micalizzi. “We don’t know.”