by Michelle Davis
Jemimah tells nurse George Rapoza that she turned 7 three days before Christmas, she has exactly three barrettes in her neatly braided hair and her lips are extra pink because she drank Kool-Aid before arriving at Children's. Every month for the past year, Jemimah has come to Rapoza for an infusion of packed red blood cells to help fight back the pain and progress of her sickle cell anemia. During this conversation, Rapoza also has managed to figure out her weight, height, blood pressure and temperature.
After 28 years as a nurse, the last 14 in the Center for Ambulatory Treatment and Clinical Research at Children's Hospital Boston, Rapoza knows how to get the vital information he needs while making his patients feel calm and comfortable.
"I'm going to give your arm a hug today," he tells Jemimah, looking her straight in the eye as he tightens her tourniquet, preparing to insert an IV so healthy blood can be transfused into her body for the next two hours.
Rapoza pulls a magic glove out of his pocket. It's invisible so Jemimah can't see it, although she is staring very intently as Rapoza puts it on her hand, one finger at a time. He's prince charming coaxing a reluctant princess. He massages her hand as he slips the invisible glove above the elbow.
"You'll see, it won't hurt as much with the magic glove."
She smiles shyly at him. He talks to her about school. She tells him she knows how to spell L-O-V-E.
"You were very brave yesterday," says Rapoza. "You're always brave." Jemimah's mother nods in agreement.
"What do we do next?" he asks.
"Wash it," she says softly.
"Then we do the pinch, right?"
"Right," says Jemimah. "Will you use the small needle?"
"Always," Rapoza reassures her. "Did it hurt yesterday?"
"No," she replies. Together, they count "1, 2, 3..." Jemimah flinches, but it's over in a second.
The magic glove, formally know as behavioral distraction, is just one of many tricks that nurses at Children's have in their bag to reduce pain and anxiety. The Center for Innovation and Clinical Scholarship in Pediatric Nursing (known as the Center for Nursing), is harnessing both time-tested and new techniques as part of a hospital-wide effort to make pain detection and its management the "fifth vital sign," along with temperature, pulse, blood pressure and respiratory rate.
"You see a lot of pain and you want to fix it," says Joan O'Brien, RN, who went on a sabbatical through the Center for Nursing. During her eight weeks away from the patient floor at Children's where she cares for children with cancer and blood disorders, O'Brien worked under the steady hand of Jean Solodiuk, MSN, nurse practitioner with the Pain Service. For the past two years, Solodiuk has championed an effort to make pain management a hospital-wide priority. With help from experts around the hospital, six age-appropriate pain assessment tools and an intake form to document a patient's history of pain have been selected for use throughout the hospital. O'Brien hopes to consolidate this information into a simplified "patient flow" sheet, which will be used at the bedside to track key information on every patient's vital signs.
"It's exciting to know that we're looking at every child's pain, whether it's a needle prick or post surgery, to find ways to minimize and manage that pain," says Solodiuk.
According to clinical psychologist Leora Kutter, PhD, who was the keynote speaker for a "Colloquium on Pain" sponsored by the Center last fall, there are least 17 factors that can affect a child's response to pain stimulus. Caregivers not only need to understand the degree of illness or injury and the effects and interactions of pain medications, but also the child's individual pain threshold, learned pain behaviors and the meaning of the pain to that child.
In its effort to ensure that no child feels pain unnecessarily, Children's Hospital has a wealth of experience from which to draw, since one of the country's first pediatric pain services began here in 1986. That Pain Service, which was started by Charles Berde, MD, PhD, who currently serves as the service's medical director, and Navil Sethna, MD, senior associate in Anesthesiology, has become one of the busiest pediatric pain services in the country, treating 20 to 40 patients at any given time.
The Pain Service, which is a multidisciplinary group consisting of anesthesiologists, neurologists, psychologists, nurses and acupuncturists, is dedicated to ensuring that children receive the same tested pain relief that adults have been benefiting from for years.
"We are always looking for evidence-based results to support the best practices of pain management," says Berde. With members of his team, Berde was the first to demonstrate that patient-controlled devices achieve greater pain relief with the same amount of narcotics as clinician-administered regimens. Collaborating with oncologists at the Dana-Farber Cancer Institute, they have also done groundbreaking work on the best use and delivery of analgesics, or pain medications, to patients who are in the terminal stages of cancer.
The Pain Service is also working on a number of clinical trials. Lisa Scharff, PhD, a psychologist, is the principle investigator on a five-year National Institutes of Health grant to study the benefits of biofeedback in the management of recurrent abdominal pain in children. Biofeedback, which is the guided use of a person's imagination to help them relax, has already proven successful in managing migraines. Scharff thinks the same will be true for children who experience frequent abdominal pain; 90 percent of which does not have an obvious physical cause and is therefore difficult to treat.
A less frequent but extremely painful condition known as reflex sympathetic dystrophy (RSD) has been a major focus of the Pain Service and Children's Physical Therapy Department, which recently completed a series of NIH-sponsored clinical trails proving the benefits of physical therapy and cognitive-behavioral treatment for RSD. Affecting girls eight times more frequently than boys, RSD alters circulation in the legs, hands and face. Sufferers complain of constant, severe burning or deep, aching pain, which can last for days or for years. The pain is so excruciating that patients often consider taking their own lives to find relief. If left untreated, RSD can progress into a much less treatable condition in adulthood.
Sethna is the principle investigator for a multi-center randomized trial testing the effectiveness of using a new system called S-Caine, which uses a skin patch to deliver pain medication. Sethna believes S-Caine, when tested against a numbing cream called EMLA, will act more quickly, which would be important for treating children in an emergency setting. There is also evidence that S-Caine will not cause allergic reactions and will harmlessly dissipate in the body. Finally, unlike EMLA, which makes the skin blanch, S-Caine dilates veins, making them more visible and easier to reach; a welcome relief to those who have witnessed the repeated needle stick of a child with small and hard-to-reach veins.
While technical advances in pain management hold great promise for the future, the art of listening is still one of the best assets clinicians have in the fight against pain. Just ask Maureen Schnur, RN, the first nurse to be selected for sabbatical by the Center for Nursing. With 20 years of nursing experience (the last nine in the Post Anesthesia Care Unit, or PACU) Schnur has learned how to read even the subtlest signs of pain.
"First and foremost, you have to listen to the patients and do everything possible to comfort them and stay ahead of the pain cycle," she says.
For Schnur that means working with the anesthesiologist assigned to the PACU to make sure pain medication is given generously, but appropriately. The care Schnur provides to 15-year-old Joanne, who has a special IV port inserted into her elbow so cancer-fighting drugs can be administered to a bone tumor, is a perfect example. Upon her arrival in the PACU, Joanne is groggy and can't communicate her pain with a zero-to-10 scale, but instead nods when Schnur says "no," "moderate," or "severe" pain.
Schnur gets to work. She applies warm blankets to Joanne's feet, legs and arms to keep her warm and relaxed so the pain medicine can work more effectively. Slowly waking up from the anesthesia, Joanne complains of a sore throat caused by the insertion of a breathing tube during surgery, so Schnur enlists Joanne's mom to help nurse her daughter with a Popsicle. Throughout Joanne's recovery, Schnur checks with the surgeon and anesthesiologist to make sure pain medications are available in adequate quantities; she has to balance the use of medication with the need to keep Joanne's breathing steady and strong. As Joanne becomes able to rate her pain on a scale of zero to 10, she tells Schnur that her pain score went from six to three and finally to zero.
"I like to give them a good start in the PACU before they get to their rooms," says Schnur. "I know a child's pain is improving when she opens her eyes and talks to me about things other than her pain. If I get a smile too, that's all the better."
Within two hours of her arrival in the PACU, Joanne goes from nodding to indicate her pain to asking Schnur what she will have for dinner, whether she can have a milk shake and whether her room has a good view. Schnur smiles and listens closely. She has met her goal.
With philanthropic support, the Center for Innovation in Clinical Scholarship in Pediatric Nursing pursues excellence at Children's and throughout the nation. Special thanks goes to The Thoracic Foundation, whose generosity helped advance the center's pain care initiatives with a particular focus on children undergoing thoracic surgery. For more information, contact Cindy Zilch of the Children's Hospital Trust at (617) 355-2416.