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Haven't got time for the pain

You can't ignore a child in pain. You just want to fix it," says Joan O'Brien, RN, clinical educator on the Hematology/Oncology Unit at Children's Hospital Boston. O'Brien has seen more than enough pain in children with sickle cell anemia, a genetic blood disorder affecting red blood cells' ability to carry oxygen that afflicts one in 600 African-American babies (and a few of Caribbean and Mediterranean descent). Normal red blood cells—smooth, round and flexible—can move easily through blood vessels. By contrast, sickled cells are stiff, sticky, C-shaped and tend to cluster, causing painful blockages that can lead to organ damage or even stroke.

Sixteen-year-old Jessica Villegas, a Children's patient since birth, knows only too well how intense these sickle cell episodes can be. For years the pain has brought her to the hospital's Emergency Department (ED) every three or four months.

"Jessica's pain is severe and difficult to manage, and it's important to get it under control right away," says O'Brien, who knows Jessica from many years of hospitalizations on the Hematology/Oncology floor. "The ED is often the first stop for sickle cell patients in pain, but residents and interns rotating through may never have seen a sickle cell crisis before," she explains. "Understandably, they're unsure about administering the high doses of medication this kind of pain demands." Patient-controlled analgesic (PCA) pumps are an effective way to administer pain medication, but because they require careful monitoring and patient education they are not standard emergency room treatment. Patients are connected to PCAs once they're admitted to the floor, often hours later.

Two years ago, after Jessica suffered a delay in admission, O'Brien began to wonder if there was a better way to serve these patients. With support from Children's new Center for Innovation and Clinical Scholarship in Pediatric Nursing (CICSPN), in collaboration with several other departments, she spearheaded a change. Her initiative shows how quickly a good idea can transform patient care.

The CICSPN was established to bring the best clinical practice, education and scholarship to nursing at Children's. It focuses on three critical areas: developing and testing new care practices, creating an environment that supports clinically based nursing research, and fostering collaborative ventures between academic and clinical settings. The Center also is addressing pediatric nurse training and concerns about the nationwide nursing shortage by actively recruiting and retaining high-level pediatric nurses. "Children's is prepared to play a critical role in determining what pediatric nurses need to know, how they are trained and the way they practice," says Eileen Sporing, MSN, RN, senior vice president for Patient Care Operations. "We're positioned to advance the excellence of the nursing profession at Children's Hospital Boston and throughout the nation."

In the fall of 2001, the Center awarded O'Brien an eight-week sabbatical. Freed from her day-to-day duties, she conducted a literature search to find the current best practice in pain management. Together with Pain Services and the Hematology and Emergency Departments, she created guidelines for ED physicians treating sickle cell crises. O'Brien also taught the ED nursing staff how to administer the PCA pump, produced an instructional video and designed an evaluation program to get feedback directly from parents in the emergency room. Her efforts paid off. A year later, evaluations show that ED waiting time and pain levels have been reduced.

Appropriately, Jessica Villegas was one of the first to benefit. "It used to be so frustrating to watch her wait hours to get relief," says Lourdes Santiago, Jessica's mother. "The next time we brought Jessica to the ED, they hooked her up to the PCA pump right away and she was admitted to the floor with her medication already infusing. Joan's persistence made a huge difference, because faster treatment means Jessica can go home sooner."

This moment of triumph for one patient family has a wider significance in improved care for hundreds of patients at the hospital—and beyond. Last fall, O'Brien presented her story at the 2002 Association of Pediatric Oncology national conference. And recently, the ED staff celebrated another achievement when they treated a young sickle cell patient with a PCA pump so promptly and successfully that they completely eliminated the inpatient stay. -KK

Your gift to the Center for Innovation and Clinical Scholarship in Pediatric Nursing will fund nursing sabbaticals, clinical research and other critical initiatives. To learn more about how you can help, please contact Cindy Zilch at the Children's Hospital Trust, (617) 355-2416 or cindy.zilch@chtrust.org