November / December 2006
A Family's Search
On January 15, 2001, Justin Micalizzi, a healthy 11-year-old boy, was taken into surgery to incise and drain a swollen ankle. He was dead by 7:55 a.m. the next day, leaving behind two grieving and bewildered parents who desperately wanted to know why their son had died. But medical care was to fail the Micalizzis twice first their son died, and then no one would explain to them why. I was one of the consultants, from another Children's Hospital, asked by Justin's parents to review his records and figure out what went wrong. Here is the story as told to me by Justin's mother, Dale Ann Micalizzi.
Justin was an athletic child who loved to play basketball, race BMX bikes, and go bowling with his friends. On Jan. 13, 2001, Justin returned from school with fever and ankle pain. In the next 2 days, he saw three doctors and was put on ibuprofen and antibiotics. Labs, X-rays, and a Lyme titer were done. On Jan. 15 at 10 a.m., he saw an orthopedic surgeon who tapped his ankle joint for fluid. The Micalizzis were advised that the fluid did not appear infected, and Justin was referred to a rheumatologist. Justin's parents were called later that day and told to rush to the hospital for emergent surgery as the tap had tested positive for Staphylococcus aureus.
In the pre-operative area, Justin was febrile, nauseated, pale, complaining of ankle pain, and his blood pressure was low. Justin's mom, Dale, was nervous. It was a holiday, and the surgeon was running 3 hours behind schedule. The surgeon failed to introduce himself and rushed as he explained the procedure to Justin's parents. Dale told Justin to "think happy thoughts" their secret code that everything would be OK as he was wheeled off to the operating room (OR). The nurses reassured the Micalizzis, saying, "We'll take good care of him."
The Micalizzis next saw the orthopedic surgeon when he approached them, very upset, to let them know that Justin had arrested in the OR at 9:20 p.m. as the ankle irrigation was being completed. Although the healthcare team had restarted Justin's heart, they were having trouble stabilizing his oxygenation and blood pressure. The Micalizzis authorized an unstable transport to a nearby pediatric intensive care unit (PICU).
Justin continued to have low blood pressure and poor oxygenation despite continued escalation of intervention in the PICU. After several more arrests, Justin was removed from life-support at 7:55 the next morning.
Ten days later, the Micalizzis embarked on what, so far, has been an unsuccessful quest to learn why Justin died. First they met with the anesthesia group in charge of Justin's case who told them they might never know what happened. They were referred to infectious disease and cardiology specialists. The Micalizzis had the OR and PICU records reviewed by specialists in anesthesia, infectious disease, cardiac intensive care, cardiothoracic surgery, and orthopedic surgery. All of the specialists stated that the pre-op and OR records were too incomplete and illegible to hypothesize about a definite etiology. Just to be safe, both of the family's other children were screened by cardiology and found to have no serious cardiac problems. The Micalizzis asked the PICU doctor and the pediatrician what they thought. They discussed several possible etiologies, but both said they were truly baffled. The orthopedic surgeon was again contacted, but he still had no explanation for what had happened.
The autopsy results were finally complete almost 3 months after Justin's death. The report described the cause of death as "fatal cardiac arrhythmia in a child with a mixoid degeneration of the mitral valve during incision and drainage of a septic ankle." Cardiac specialists reviewing the report told the Micalizzis that this would not have caused the arrest.
The Micalizzis then filed their concerns with the New York State Health Department Hospital Investigation Team and 2 months later requested the results of the quality assurance (QA) reviews of the case from the hospital where the surgery was performed. The hospital informed them that it was working closely with the Health Department to investigate Justin's case and eventually declined to produce the QA report for the Micalizzis. In November, 11 months after Justin's death, they heard from the Health Department that its investigation was complete: "No known cause of death."
To lose a child is the most painful and devastating experience a family can endure, but not to be provided with an explanation is even more heart-breaking. Dale Ann Micalizzi reflects, "If only, someone had said to us, 'We have no idea what happened, but we will do everything in our power to find out,' it would have made this journey a bit more bearable and surely not as long as it's been."
The needs of patients and family members following adverse medical events are similar and well known. Gallagher et al. (2003) found that patients are frequently left with unmet needs following medical errors:
Patients wanted disclosure of all harmful errors and sought information about what happened, why the error happened, how the error's consequences will be mitigated, and how recurrences will be prevented. Although physicians disclosed the adverse event, they often avoided stating that an error occurred, why the error happened, or how recurrences would be prevented. Patients also desired emotional support from physicians following errors, including an apology. However, physicians worried that an apology might create legal liability.
More than 5 years have passed since Justin's death, and the Micalizzis continue to search for answers. When the statute of limitations was about to run out, they hired an attorney who was willing to assist them with deposing the physicians involved. The Micalizzis' only interest was in learning more about the circumstances of Justin's death, but it became clear as they pursued legal avenues that they might not learn anything new and that the process would be terribly long and painful. The case was dropped after 9 months of depositions.
Dale Ann Micalizzi has spoken at healthcare conferences about the need for safe, compassionate, patient-centered care, emphasizing the importance of full disclosure following adverse events. Her goal is to present Justin's story as authentically as possible from a mother's viewpoint. She distributes bookmarks made in memory of Justin, which display the following quote:
Integrity: "The highest courage is to dare to be yourself in the face of adversity. Choosing right over wrong, ethics over convenience, and truth over popularity...these are the choices that measure your life. Travel the path of integrity without looking back, for there is never a wrong time to do the right thing."
Adrienne Randolph is a senior associate in critical care medicine at Children's Hospital in Boston and an associate professor of anaesthesia at Harvard Medical School. She may be contacted at firstname.lastname@example.org.
Dale Ann Micalizzi may be contacted at MicalizziDAG@aol.com. Please visit Justin's HOPE at www.taskforce.org/justinhope.asp.
Gallagher, T. H., Waterman, A. D., Ebers, A. G., Fraser, V. J., & Levinson, W. (2003). Patients' and physicians' attitudes regarding disclosure of medical errors. Journal of the American Medical Association, 280, 101-107.