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On November 7, 2000, Tommy Montoya awoke with a sore throat. While the rest of the country flocked to the polls, the high school senior visited his family physician. By the end of the day, America faced a presidential controversy. Tommy faced a diagnosis of acute myeloid leukemia.
A month later, that aching throat was a fond memory, as Tommy lay in a hospital bed, writhing in agony. “He didn’t have just one kind of pain,” recalls his mother, Libby Montoya. “The bones inside his legs and arms were hurting. The nerves on the surface of his legs and arms were hurting. His shoulders and rib cage were hurting. He had ulcers lining his esophagus from his stomach to his mouth. That’s when they called in the pain team.”
The Pain Management Service at St. Jude Children’s Research Hospital comprises anesthesiologists, nurses, pharmacists, physical therapists and psychologists who work with patients who have complicated pain issues. Clinicians refer their patients to the service if the children have pain that is unusually complex. “The body of knowledge for anything in medicine today is so humongous that there is just no way anybody can know it all,” observes Libby, who is a registered nurse as well as a St. Jude parent. “The pain team knows what works with different kinds of pain. They know what drugs can augment each other and which ones will interact. You really need one team calling the shots in this area. I’ve been in health care for 28 years, and I’ve never worked with a team that has the comprehensive capabilities of this group.”
No more bullet biting
Cancer and its treatment almost always cause pain. Tumors press on nerves, bones and organs; radiation damages the skin and mucus membranes; chemotherapy agents inflict brutal side effects. In the past, medical professionals treated pain almost as an afterthought—after all, eradicating disease was the primary goal. As cure rates increased, clinicians recognized the need to alleviate suffering. They learned that by controlling pain they could actually speed recovery. Acute pain increases a patient’s heart and respiratory rates, metabolism, blood pressure and stress hormones. Children who are hurting need more oxygen. They have trouble participating in physical therapy or following the mouth-care regimens that are so important for those undergoing cancer treatment. They also experience more depression, anger and insomnia.
“There’s good science that has come out that shows that you don’t breathe as well when you’re in pain, so you get a higher risk of pulmonary complications after surgery,” explains Linda Oakes, RN, MSN, St. Jude pain clinical nurse specialist. “Chronic pain influences your immune system, so you don’t heal well. You don’t eat as well; you don’t sleep as well. It really is not just a case of ‘Oh, I don’t want to hurt’; pain management benefits the whole body. We want our patients to survive and to do that with the least trauma possible.”
Doralina Anghelescu, MD, medical director for the Pain Management Service, says the group provides about 150 consultations a month. “Not all hospitals have pain services,” says Oakes. “I think we’ve been very blessed with the resources to have people dedicated to that service. I would like to see us become the cutting edge in pain management in pediatric oncology. Why shouldn’t we be? We’re already the leaders in pediatric oncology.”
Just say “yes”
St. Jude is well on its way to achieving that goal. The hospital is the only pediatric institution involved in a National Comprehensive Cancer Network project to create standardized pain guidelines. The new standards will be invaluable to health care workers throughout the country. Most nursing and medical students receive minimal training in pain management. “Sometimes—what is worse—they’re taught wrong information,” says Oakes.
“Clinicians want to do better with pain management, but they have not always been given the education or the tools to do so. We do not want to just treat the patients with complex pain problems; it is just as important for us to help the patient’s primary team know how to treat that pain. We do that by attending rounds and learning from them what is going on with the patients. We work together as a team to help all clinicians improve their own ability to treat pain experienced by children at St. Jude.”
Some health care workers have been taught that children, especially infants, cannot feel pain. “Many studies have shown that infants do feel pain, and that they can remember it in subtle ways down the road,” says Oakes, who has published several journal articles and book chapters in her field. Another myth is that the use of prescription narcotics often leads to addiction. “I’ve been working in pain management formally for six years, and I’ve not seen one patient who has become addicted because we gave narcotics for pain,” Oakes says.
Pain Management staff take every opportunity to educate families and re-educate staff members through consultations, in-service training and lectures. Team members study the medical literature and travel the country searching for innovative treatments. They write pain management policies for the institution, and they educate nurse practitioners, pharmacists, residents and fellows who work at St. Jude. “Pain management is such a growing science that we’re learning all the time about better ways to do it,” says Oakes, who has traveled to El Salvador and Venezuela to teach nurses through the St. Jude International Outreach Program.
Members of the service are also researching better strategies for treating pain. St. Jude recently participated in a multi-site study that used fentanyl patches to provide pain relief for children. The patches adhere to the skin and continuously deliver a narcotic that controls pain. Traditionally, the patches have been used for adult patients; the St. Jude study found that ones containing smaller doses of medication could be used successfully on children. “Ultimately, the drug company we worked with will make these patches available on the market,” says Anghelescu. Other upcoming research projects include a study to determine the best way to give anesthesia for procedures and projects to evaluate new methods for managing postoperative pain.
Solving the puzzle
Tommy Montoya’s case challenged even the most seasoned pain specialists. “He was just such a puzzle,” recalls Anghelescu. “Every day we struggled with something new.” Tommy suffered from multiple kinds of pain simultaneously, and the pain changed as his treatment progressed. “He was on different concoctions of things at different times,” recalls Libby, “different combinationsof morphine, as well as other drugs to treat the bone pain. He would swallow lidocaine to deaden the pain from his mouth and throat ulcers. Then he developed peripheral neuropathy, which means that the nerve endings were inflamed from the chemotherapy.”
In March of 2001, Chris Montoya donated bone marrow so that his brother could undergo a bone marrow transplant. Then the unthinkable happened: Tommy developed Guillain-Barré syndrome, a rare disorder in which the immune system attacks part of the peripheral nervous system. Tommy was almost totally paralyzed. “The nerves that control your motor activities disintegrate in Guillain-Barré,” says Libby. “The paralysis doesn’t go away until those nerves grow back. As they grow back, the nerves are very sensitive. So now Tommy had another source of pain.”
One Saturday evening, Tommy lay in the hospital, tormented with horrendous pain that seemed impervious to treatment. The St. Jude staff called Anghelescu at home. All night, she searched for a way to diminish Tommy’s suffering. At 6 a.m. Sunday morning, she walked into Tommy’s hospital room and handed a journal article to his mother. “This is what I’d like to try with Tommy. I want you to see it and understand it,” she told Libby.
“During the night, Dr. Anghelescu had found an article on the Internet about a cardiac drug, and how it could interact and block the spastic nerve endings to prevent the pain,” says Libby. “She cared enough about me as a person and as a cardiac nurse to recognize that I was going to want to know how this drug works. And it was amazing. It worked!
“I have a special spot in my heart for Dr. Anghelescu for many reasons,” Libby continues. “But I will never forget how she took her weekend to search the Internet and find something else to make my child better.”
Although Tommy does not recall much of his treatment, he vividly remembers the neuropathic pain. “You know the sensation you get when your leg’s asleep—a shooting tingling?” he asks. “I’d get those up and down my legs all day long and all night long.”
The clinical pharmacist on the service is routinely consulted for dosing recommendations for various medications used to treat pain. John McCormick, PharmD, admits that Tommy's case was complicated. “We thought we had used every class of pharmacologic agents that were available to treat Tommy’s pain,” he says. “Then Dr. Anghelescu proposed the use of the cardiac drug. Since we had previously had very little experience with this, it meant doing a little research on my part to come up with the best way to deliver the therapy. Fortunately, we were successful.”
The Rehabilitation Services department provided Tommy with support garments to compress his throbbing nerve endings. “Sometimes pain can be associated with inactivity,” says Lola Cremer, a physical therapist and member of the Pain Management Service. “We also helped Tommy by enhancing his mobility, which reduced some of the discomfort related to prolonged inactivity.”
Pain Management Service psychologists assisted Tommy in dealing with the inevitable feelings of depression that accompanied his interminable battle with pain. “In the first six weeks of his senior year in high school he was told that he had leukemia. For the next year, he spent every holiday as an inpatient. That’s depressing,” says his mom. “But members of the pain team knew about an antidepressant that also helped with neuropathic pain.”
Mark Miles, PhD, and his colleagues in Clinical Psychology wield an arsenal of behavioral weapons in the war against pain. Many Pain Management Service patients learn to fire those weapons. Relaxation techniques help children counter the body’s physiological responses to pain. Systematic desensitization exercises reduce their anxiety levels. Clinical psychologists at St. Jude also use hypnosis, visual fixation points and guided imagery to block out pain. “You don’t eliminate the pain experience, but you do reduce the degree of mental processing that is given to it,” explains Miles. “There are so many aspects of treatment that children have no control over. By using tools to help manage pain, they feel that they’re doing something that contributes to their health and welfare. Nothing lifts somebody out of a feeling of helplessness as much as having success.”
Members of the Pain Management Service say they find fulfillment in contributing to that success. “Many times, children come into the Pain Clinic miserable, and when they leave my area they’re smiling and saying ‘Thank you,’” says Alisha Broglin, RN. “Parents come in tense and in tears, and they leave relaxed and smiling. That’s when you know you’ve made a difference.”
Life after pain
In May of 2001, Tommy left St. Jude for four hours to attend his high school graduation. He was so weak that he could not push the button to give himself morphine during the ceremony. “He would turn in his wheelchair and say, ‘Mom, I need more morphine,’ and I’d punch the button for him,” says Libby.
In the ensuing months, Tommy’s pain diminished and his strength gradually increased. In January of 2002, Tommy drove to St. Jude and returned his wheelchair, braces, canes, crutches and other assistive devices. He didn’t need them any more.
“Tommy’s still with us, and he’s leukemia free,” says his thankful mother. “And that made it all worthwhile.”
Reprinted from Promise magazine, summer 2002.