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This One's for billy
This One's for Billy Patricia N. Watkins, MD B
t was Saturday morning in Salt Lake, a n d the people who turned out for the Sunrise Symposium on "Pain Control in the Pediatric Patient" had to be among the most grimly serious a nd frighteningly dedicated burn care professionals in the country. The depth of their commitment was proven by their very presence: unlike many members of the American Burn Association (ABA) who were still sleeping the sleep of the just, worn out after 2 intense days of nonstop presentations capped by the ABA Awards Banquet the night before, this determined group had gotten up to face the daunting prospect of institutional coffee and cholesterol at Z.O0 AM on the f i nal day of the ABA's annual meeting. Many would beflying home later that same day, scattering across the country to 30 different burn centers, large a n d small, well-known and obscure. B u t for n o w they were here, a multidisciplinary alphabet soup of qualified and caring people who 'd gathered in the hope offinding . . . something. As I poured my own cup of coffee and looked around at the near-capacity crowd, I wondered what that something would be. It was not answers. The moderators of the session made that plain in their opening remarks, freely admitting that they had no didactic advice on how to approach the problem of relieving the pain of children with burns. Instead, they suggested that we each describe our own facility's response to the problem of pediatric pai n control. So one by one each person spoke, a n d what emerged was a litany of quiet desperation: 9 We don't know what to do. 9 We can't get our doctors to see that it's a real
problem. Reproduced in part from Watkins PN, This one's for Billy, J Burn Care Rehabil 1993; 14:58-64, with permission from Mosby-Year Book Inc. Patricia N. Watkins is in private practice as a psychiatric consultant to the Burn Center at the Columbia-Augusta Regional Medical Center, Augusta, Ga. For reprints write Patricia N. Watkins, MD, P.O. Box 3726, Augusta, GA 30914-3726. Int J Trauma Nurs 1996;2:78-84. Copyright 9 1996 by the Emergency NursesAssociation. 0273-8481/96 $5.00 + 0 65/1/75251
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We use distraction a n d deep-breathing techniques, but sometimes they d o n ' t really work all that well, a n d we aren't sure what else to do. 9 We don't know what else is safe to try. 9 Our residents won'tprescribe morphine f o r kids. 9 We'll use something like Tylenol or, if it's really b ~ , Tylenol #3. 9 Iguess we really don't do much of anything. What theparticipants lacked in answers, they sure made up f or in honesty. About two-thirds of those attending had already spoken, when one person's story gave a face and a name to what could be f o u n d at this gathering. The face, swathed in bandages, is that of a 4-year-old boy, a n d the name is outrage. The voice that gave form to these things belonged to a middle-aged lady with a kind face, a face with just enough lines to let you know that she could set her j a w a n d get things done when she had to, even if they were hard. With her graying hair and polyester pantsuit, it was easy to imagine her laughing at the church picnic or wiping away a secret tear of pride at the third-grade play on Parents' Day. I did not catch her name, but she was everybody's mom and next-door-neighbor in the kind of world where you would like to live. As she began speaking she did so shyly, not making eye contact, as if not sure of her right to an opinion. "Well, on my unit, you see, I'm just the ward secretary. So I don't really have a lot of what you'd call 'clinical contact' with thepatients. I mean, I don't do dressing changes or anything." She nervously shot a quick glance around the room, as if to be certain that none of us misunderstood a n d thought that anyone as ignorant as her would be allowed to care for patients at the fine place where she worked. Apparently reassured by what she saw, she continued, her voice gathering a little strength: "So I don't really know much about pai n control. But sometimes, when I'm caught up on my work, I get to hold the children or rock them. "Her eyes were looking beyond the meeting room now, focusing on scenes f rom memory, scenes that made her lift her head a n d face us all: "When I left to come here, there was a little boy on my unit. His name is Billy and he's only 4years old. He's burned pretty badly;
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VOLUME 2, NUMBER 3
he's been there a while. And when they change his dressings, Lord, #just hurts him so, and he cries.., he cries and cries." The agitated wringing of her hands that had begun as she spoke of Billy stopped, but the slow tears continued to run ignored down her face. "After they change his dressings, I hold him. I tell him it's going to be alright, "she ended, in nearly a whisper. Pausing for a moment, she looked toward her lap and her helpless, empty hands. Her tears slowed, drying in the heat of a fierce determination. She lifted her head, and, her voice strong and steady once more, she spoke with a calm and certain defiance; "And that's why I came here this morning. There HAS TO BE something that can be done to help that child. THERE HAS TO BE. And I came here hoping to f i n d out what." Her gaze was directly on each of us, each of us responsible for ordering things that hurt, for doing the things that hurt, and therefore responsible for knowing how to stop the hurting. And except for the soft sounds of people stirring uneasily in their chairs and a low murmur of sympathy, the silence that followed was deafening .... [C]hildren and their families follow [a difficult path] in balancing the demands of normal human development with those of the equally complex process of postburn adaptation .... [A]n aspect shared by almost the entire body of published work about the needs of children with burns .... it springs from acts of omission rather than of commission. It is the peculiar and nearly complete disregard of the impact of burn-related pain on pediatric patients. It is the epitome of exactly the kind of "widespread institutional denial" about the existence of pain in patients with burns d e n o u n c e d in the newly published U.S. Department of Health and Human Services Clinical Practice Guideline 14 for the management of acute pain after trauma. Because of this denial, pain is the unexamined wild card in all of the psychosocial studies in this issue, as it has been in most studies examining issues of behavior and adjustment after burn injury for both children and adults. For example, Kravitz et al. view dreaming as a coping mechanism that a child can use to process emotionally distressing experiences. Is it coincidence, then, that 6% of the children they studied at least 1 year after burn injury still had nightmares ABOUT THEIR BURN TREATMENTS? The authors do not comment, even though the n u m b e r of children with nightmares about treatment rivals the number whose nightmares were about the injuring event itsel~ Moore et al. note the "emotional trauma" that results from "a
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lengthy hospital stay" and "separation from family members" but do not mention pain at all. They are puzzled w h e n no statistically significant differences are found between well adjusted and poorly adjusted groups of pediatric survivors of burns based on "demographic and burn-related variables." Unfortunately, none of the variables examined include any measure of the adequacy of pain control during acute burn treatment. I agree completely with the conclusion of Moore et al. that "only a prospective study can determine . . . if events associated with adjusting to burns affect the personality by making the person more withdrawn, timid, and insecure." But what variables should such a study examine? As part of the answer to that question, let me introduce you to someone whose sto W provides important clues. Ashley arrived at our burn center accompanied by simply the most bizarre document I had seen in my entire psychiatric career: the transfer summary from the hospital where she had received treatment during the first 10 days after her burn injury. The summary described a patient whose hospital course was "noteworthy for the fact that at times [the patient] has been very uncooperative and abusive to both the nursing staff and physical therapists" and w a r n e d that "[the patient] has required large amounts of pain medication." The sight of Ashley, a big-eyed, bird-boned, 8-year-oldgirl (who weighed a whopping 50pounds without burn dressings) quietly clutching a battered, blue-haired doll as she waited to be wheeled into her new room, made me wonder if the referring physician had mixed up her case with that of someone else. A manic truckdriver, maybe. Something here did not make sense. I read on. Ashley was no inner-city child, streetwise, with a smart mouth and violent sense of self-protection:far from it. The daughter of a physician and a full-time homemaker, Ashley led a middle-class life, protected by the loving boundaries of good schools, special enrichment classes for the gifted, caring adults who reasoned instead of spanked, and Sunday worship of a loving God Who listened. It was a life that left her completely unprepared for the world of modern pediatric burn care that she was forced to enter after an accident left her with second-degree burns to her legs. These burns covered 14.5% of her total body surface area. In this world, as her transfer summary described, she was given "50 mg meperidine hydrochloride (Demerol) and 2 mg diazepam (Valium) [orally] with each whirlpool debridement." She was subjected to this treatment twice a day. No one lis-
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tened when she said that she hurt. No one did anything differently when she cried or screamed. No one but her mother noticed anything was amiss when she begged to have an old doll brought to her, the doll she had carried through all the normal phases of separation in her earlier development, loving it into faceless, filthy indispensability at this time of need (although it had been retired with much proud ceremony some time ago in her real life, her life before this burn). Despite all of Ashley's attempts to communicate her needs, attempts ranging from age-appropriate to regressed, no one increased the analgesic dosage that was clearly clinically inadequate from the start. No one increased the amount of anxiolytic medication provided, although the dosage she continued to receive was so low #provided little relief of anxiety a n d no amnestic effect (making each whirlpool debridement a special enrichment class in anticipatory anxiety for this gifted student). No one thought to order that either of these oral medications be given sufficiently in advance of ashley's treatments so that there would be a chance for them to be absorbed a n d to have some therapeutic effect by the time they would be needed. No, no one pai d any attention at all. They were too busy getting the job done, trying to heal the burn wounds, trying to save her life. Until she fought. A n d kicked. A n d spit. A n d tried to bite. Then she finally had their attention. They transferred her. I will spare you the details of how our multidisciplinary team worked together to prepare Ashley a n d her parents f or her first whirlpool treatment at our burn center. It took several hours to do and would make tedious reading. But I will share with you the indelible image of Ashley that remains in my mind. It is of that moment just before being lowered into the whirlpool tank when she suddenly remembered to ask for something experience had taught her that she would need. Something that her caregivers at the other hospital had told her about and had taught her to use. Something that had helped her more than anything else to endure what she had been forced to endure to that point. Ashley politely asked for a towel that she could p u t in her mouth "to bite on to keep from screaming," than dozed off as the intravenous morphine a n d lorazepam (Ativan) she had received distracted her. Yes, Ashley, there is a n e e d for research into the m a n n e r in which poorly relieved pain affects kids with burns and the mechanisms b y which it does so. And there is a n e e d for lots of other research on the subject, too. R e s e a r c h that is not m e r e l y psychosocial but biopsychosocial. Studies that buck
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the trends in recent burn research and clinical practice to focus on the use of cognitive and behavioral techniques for pain control (hypnosis, progressive relaxation, distraction, breathing techniques, imagery, time-outs, parent participation, etc.) in pediatric patients to the exclusion of pharmacologic alternatives that are more widely available, more often a p p r o p r i a t e , m o r e d e p e n d a b l e in effect, a n d cheaper. Where are the studies that tell us which of the cognitive or behavioral techniques are most helpful for each age group? Where is the study that compares the efficacy of ANY of these techniques to that of giving a child morphine, which is the standard intervention used to relieve burn pain in adults? (This could be an interesting study: would children w h o have the option to trade each of several "timeout" cards for 2 mg of intravenous morphine apiece during the course of a whirlpool debridement instead choose to buy 90-second breaks in the torm e n t w i t h e a c h card?) H a s a n y o n e e x a m i n e d whether latency-age children can benefit from the technologic advances that permit patient-controlled analgesia? So m a n y questions, so little funding . . . . But it's not just a matter of funding, is it? It's also a matter of pain and f e a r - - n o t the patients', but our own. To be able to design the studies that will at last tel1 us what are the rational, effective options we can choose from to relieve the pain of any particular child with a burn, w e must first admit that kids are hurting. And that is hard to do, because a lot of us have had to stop hearing what the kids are saying and to stop seeing w h a t the kids are doing because it hurts US too m u c h to see them in pain. If one reviews the literature on both the topic of burn pain and that of nursing burnout, a frightening pattern begins to emerge: the pattern of staff adaptation to the trauma of repeatedly having to inflict pain on helpless patients. Burn nurses have the harrowing responsibility of providing care that is often excruciatingly painful to the patient. If there is no effective team a p p r o a c h to the assessment and relief of patient pain, the nurse must learn to ignore the immediate painful impact of his or her actions on the patient to avoid feeling helpless, angry, or guilty. 15 If the nurse must repeatedly inflict pain that he or she is helpless to relieve (i.e., if he or she is to continue to treat the patient), the nurse must learn to ignore that the patient is in pain for the sake of the nurse's o w n psychologic protection. 16-18Scientific and educational articles both reflect and reinforce this m e t h o d of coping with patients in pain through statements such as "the work of pain m a n a g e m e n t includes . . . assisting
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the patient to e n d u r e pain, ''19 " d i s t a n c i n g . . . seems to b e quite useful,' "6 and "focus o n the task . . . tune out protests . . . avoid identification. ''2~ Is it a n y w o n d e r that studies have s h o w n that nurses' p e r c e p t i o n s of patient pain during treatment d o not correlate with patients' perceptions, 2~,= or that the longer o n e remains in b u r n nursing, the m o r e likely o n e is to underestimate patient pain? 22,23 Now, I a m trying not to blame nurses for inadequate pain control in children with burns. Just the opposite: it was only in the nursing literature that I c o u l d find ANY attempts to e x a m i n e the interaction b e t w e e n b u r n team m e m b e r s a n d patients in regard to pain. I think nurses and nursing researchers are a h e a d of the rest o f us in their appreciation of the importance o f a d e q u a t e pain control to patient care a n d to g o o d clinical o u t c o m e s . Instead, I believe that the self-protective p s y c h o l o g i c m e c h a nisms that affect nurse perceptions a b o u t pain operate in all of us w h o w o r k with patients with burns. I suspect that the strength of the effect o f these m e c h a n i s m s o n e a c h o f us is in inverse p r o p o r t i o n to the a m o u n t of time w e s p e n d p e r f o r m i n g clinical activities that cause patients' pain. Is it a n y w o n d e r that a w a r d secretary could see (and feel) w h a t m o s t of us c o u l d not? So, if w e are to b e c o m e any better at relieving the pain of children with burns, w e must first ack n o w l e d g e that w e are each p r o b a b l y in self-protective denial to s o m e extent a b o u t the very existe n c e of that pain. This is a frightening prospect, b e c a u s e it m e a n s starting to face the fact that w e p r o b a b l y are and p r o b a b l y have b e e n hurting little kids. A n d that's just the first of the fears w e must face to i m p r o v e the situation. The next set o f fears c o m e s from w h a t w e w e r e and w e r e not taught in our medical training. I k n o w these fears extremely well, but it w a s a little child w h o b e g a n to lead m e past them:
I heard Jennifer before I saw her. d shriek ofpure, electric agony echoed down the hallway o f the burn unit. I headed toward the hydrotherapy room at the e n d o f the corridor at a brisk walk, leaving the progress note I h a d been writing d a n g l i n g in midsentence. The only important thing at that moment was f i n d i n g out the cause o f that scream. Its twin greeted me as I opened the door to the tiny treatment area. At first it was difficult to see the source of all that sound. The H u b b a r d tank was surrounded by five o f the burn team members in f u l l reverse-isolation garb. They looked hot, harried, a n d more than a little wet. The center o f their attention was a w a i f who appeared to be in the last throes of tetanus. The bow-curve o f her back testified to the
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severity with which the swirling water stung the fresh second- a n d third-degree burns that covered her limbs. These burns covered 25% o f her total body surface area. Newly admitted, this was to be her first debridement. Newly formed, this would be our burn team 's first step on the long road o f overcoming our fears about aggressively intervening to provide p a i n relief f o r our pediatric patients. "What's the story, Dora?" I asked, catching the eye o f one o f the registered nurses present. "This is Jenny," she replied. "She's 10 years old. Thermal burns to the extremities, look mostly second. The legs are circumferential." The conversation was p u n c tuated byJenny's continued thrashing, by the voices of other team members coaxing herto "relax, breathe deep" a n d promising "the water will stop stinging if you just stay in it." They were having to back up theirpromises with a lot o f muscle just to keep her in the tank. "Haven 't y o u given her anythingforpain?" I almost h a d to shout to be heard over the din. Dora's eyes above her mask were troubled a n d frustrated. "We've already given her five [rag] of intravenous morphine. She only weighs 75pounds. Frankly, I'm scared to give her more." So was I. Like I said, this was a long time ago, at the beginning o f a long journey. B u t we did give her more. We did so out of necessity, because it was too apparent that it was wrong to cause such p a i n a n d not at least try to relieve it. We did so as a team, with myself as a physician presence, fully g o w n e d a n d beside the p a t i e n t f o r constant clinical observation. We did so with great caution, limiting our intervention to the titration o f a single analgesic, morphine. We did so patiently, suspending all treatment efforts until a n adequate level o f resting p a i n relief h a d been established. We did so with great respect f o r the legendary respiratory depressant effects o f narcotics, bringing nalaxone hydrochloride (Narcan) a n d a syringe into the room before we began, as well as a n A m b u bag ( A m b u , Inc., Lithicum Heights, Md.) a n d a crash cart (precautions that seem embarrassingly p a r a n o i d f r o m the perspective o f nearly l Oyears later). B u t we did give her more, a lot more. A n d the results were a revelation, a n epiphany, a n d a n empowerment f o r all present. A t 10 mg total dose, Jenny stopped screaming. At 15 mg total dose, she stopped crying. She relaxed in the water a n d was able to begin to converse a n d to give coherent answers to questions. A t 19 mg total dose, we were able to resume treatment. J e n n y did not appear to be in pain, but she was reporting episodic severe discomfort as burned skin was debrided away from some areas. At 23 mg total dose, she was drowsy a n d was
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dozing lightly at intervals. She was having no respiratory distress a n d was readily rousable to verbal stimuli. As b u r n team members began to shave one o f her legs as a step in debridement, J e n n y sat up slightly to see exactly w h a t was going on. Giggling, she s a n k back to rest in the tub. "Don't tell m y D a d d y what y o u ' r e doing, "she teased between chuckles. "He says I'm not old enough to shave m y legs yet. He says not till I'm 15. I don't w a n t y'all to get in trouble." We s t o p p e d administering the morphine at that point and called it a win. No matter what w e were taught in training, respiratory depression resulting from the administration of narcotics to relieve severe pain is rare. It is also completely reversible b y the intravenous or i n t r a m u s c u l a r a d m i n i s t r a t i o n of Narcan, w h i c h is available in p r e m i x e d and p r e m e a s u r e d form. Addiction is rarer still; there is simply NO evidence that so m u c h as ONE patient, child or adult, has EVER b e c o m e addicted to any substance or category of substances as a result of that substance or category of substances having b e e n used to relieve burn pain. We must k n o w these facts in our heads, at least, so that our hearts can begin to hear what the Jennifers of our experience can tell us. You see, I do not envy moderators in 1993 the job of offering answers to our hard questions about h o w to relieve the pain of children with burns, because what our heads, hearts, and experience tell us are the only answers that w e have at this point. Until the g o o d studies are done, until the most effective combinations of therapies over the course of the age and treatment cycles are known, until we have ideal analgesics that specifically relieve pain and never produce unwanted effects, we are left with only clinical experience to guide us. The good news is that, in regard to relieving the severe pain of burn injury, experience overwhelmingly supports a litany of interventions that can e m p o w e r those w h o do see the hurting and w h o want to make it stop: 9 The titrated intravenous administration of narcotics is the safest, most effective intervention you can m a k e to relieve severe or acute pain associated with b u m injury in children. 9 Children often n e e d d o s a g e s of narcotics comparable to those required b y adults with similar injuries. Some children need even more. (The D e p a r t m e n t o f H e a l t h a n d H u m a n Services Guideline TM recommends the use of the SAME m g / k g conversion factors for calculating starting doses of narcotics for children over 6 months old as for adults of less than 50 kg body weight.) 9 It is a p p r o p r i a t e to u s e b e n z o d i a z e p i n e
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anxiolytics in combination with narcotics in the treatment of burn-related pain. Given in an a d e q u a t e a m o u n t as a p r e m e d i c a t i o n before b u r n treatments, a n y of these medications can substantially reduce the amount of pain the patient actually feels by reducing the psychophysiologic contribution of anxiety to pain perception. 24 (The ones I prescribe m o s t often are m i d a z o l a m hydrochloride [Versed] a n d Ativan, b e c a u s e their brief durations of action result in little of the lingering sedation that can follow the use of l o n g e r - a c t i n g a g e n t s a n d that in turn can interfere with a child's feeding and daytime activity.) H o w e v e r , the medications in this family h a v e NO analgesic properties themselves and therefore should not b e expected to relieve burn pain adequately if given alone. 9 All of the m e d i c a t i o n s and all of the strategies that are helpful in relieving b u r n pain in adults can be a p p l i e d to c h i l d r e n with similar injuries and should b e c o n s i d e r e d w h e n d e s i g n i n g p a i n relief r e g i m e n s for children. W e h a v e to b e o v e r 21 years old to b u y alcohol in m o s t places, but there is no age limit below w h i c h the use of m o r p h i n e or h y d r o m o r p h o n e h y d r o c h l o r i d e (Dilaudid), or m e t h a d o n e or morphine sulfate (MS Contin), to relieve b u r n p a i n is prohibited or contraindicated. The bad news is that it will not w o r k for you to chant this litany alone. Achieving adequate relief of pain in children with burns requires a great deal of team effort. It is vital to the success of each child's pain-relief regimen that a specific t e a m m e m b e r be designated to oversee that child's analgesic needs. This team m e m b e r should have primary responsibility for implementing and monitoring the efficacy of an individualized analgesic regimen designed to m e e t those needs. However, to p e r f o r m these functions adequately, the designated team m e m b e r will n e e d input and cooperation from everyone involved in the child's care (including the child and the child's family) on at least a daily basis, b e c a u s e the child's needs will change over the course of time and healing. This means that it takes the c o m m i t m e n t of the entire multidisciplinary burn team to even begin to address means of assessing and improving patient pain relief. Such c o m m i t m e n t is best expressed by implementing formal team policies and procedures about pain relief. We chose something deceptively simple for our first team policy: it is unacceptable for any patient
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to have to scream in pain. In regard to procedure, we decided that whenever any patient would scream w e would stop whatever w e were doing with that patient and not resume until the adequacy of the patient's pain relief had b e e n discussed with the m e m b e r of the burn team responsible for overseeing that patient's analgesic regimen. Sounds easy, right? It took 3 years for us to m e e t this goal consistently. But the important part is that w e had a goal about improving pain relief for our patients that w e could all agree on and w o r k toward together, and we had at least a few steps planned as to h o w to begin to reach that goal. And the long-term result has b e e n that for a long time n o w the first comment visitors to our burn center usually m a k e is, "Gee, it's so QUIET!" Until the ABA gives us more guidance about policies and procedures w e should expect to see in regard to pain relief in burn centers, the best source for more information on h o w to approach the whole subject is the Department of Health and Human Services Guideline 14 that I have mentioned previously. You can obtain y o u r c o p y b y calling the Agency for Health Care Policy and Research Clearinghouse toll-free at 800-358-9295 or by writing to: Center for Research Dissemination a n d Liaison, AHCPR Clearinghouse, P.O. Box 8547, Silver Spring, MD 20907. The only excuse I can think of for a copy of this b o o k NOT to be at the nurses' station on every burn unit in this country is if the government printing office cannot k e e p up with the demand. By n o w I cannot blame you if you are wondering if relieving children of the pain associated with burns is worth all this effort. Well, w h y don't you ask a friend of mine n a m e d Taylor:
Taylor was bored. Not a little bit bored, the way you get toward the end of the long days of bedrest after autografting. Not even some bored, like you feel when you realize the "special assignments "your teacher has sent to help you keep up with the rest of the class are the most interesting thing you do, because you haveplayed the two Nintendo games available on the ward so often that you are scoring the highest POSSIBLE score every time, no sweat. No, Taylor was crashingly, totally, world-class bored. Which explained why he was hanging around the nurse's station in his wheelchair, idly flipping the tiles on an alphabet toy belonging to a youngerpatient, in the first place. Now, Taylor was a good sport. He had survived the 6-month acute hospitalization it took to heal the 68% of his body surface area covered by third-degree burns from a misadventure in the unsupervised
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use offireworks with most of his optimism about life and all of his fighting spirit intact. He had had his down days, of course, but they had been surprisingly f e w and short-lived, even through the six reconstructive admissions that followed. He had not complained about the necessity of spending two successive Thanksgivings and Christmases in the hospital to shorten the period of time he would be absent from school after surgery. And when each of his wrists was sequentially stitched to his groin for weeks on end to allow for transfer of tissue flaps, he surprised even seasoned nursing staff members with the infrequency and reasonableness of his requests. For an 11-year-old, Taylor was no wimp. Still, confined to the wheelchair, waiting for his legs to heal after still other surgeries, be was wrestling a Hulk Hogan-sized case of boredom in a tagteam match with homesickness. Desultory conversation with burn team members helpedpass the time. "These alphabet things are so lame," Taylor offered, as I wrote orders on the chart of another patient. "It's always the same things: 'A isfor Apple, ' 'Z is for Zebra.' Why can't it ever be something different?" His comments were punctuated by an exaggerated yawn and an expressive roll of his eyes in total disgust. "Well," I replied distractedly, "maybe there's room for something better. What do you think 'A' should befor?" Taylor, who periodically talked about wanting to be a nurse when he grew up (although only time will tell if this is transferential or true), thought for about a nanosecond before crowing, "Ambulance/" Okay, I thought, the choice is a little odd, but not for a kid who has been through anything close to what this one has. "And 'B'?" I asked. With a look of pure derision for the slow working of my wits, Taylor shot back "Well, 'bedrest; of course~" "You mean," I said, "like an ABC's of burn care?" "Right/" Taylor replied, enthusiasm creeping into his voice. "You could do all the ABC'S this way and make, like, a comic book/Then when a kid comes in that's burned, he could learn about everything to expect. "I had to admit it was an intriguing idea. Sofor the next hour I was drafted into the tag-team match against Taylor's boredom as we explored a vocabulary no l lyear-old should ever, ever have to study. Taylor's first associations to the letters of the alphabet were often startling ("'R' is for "respirator; 'V' isfor 'venipuncture"9, sometimes humorous ("'H' is for 'hospital food/'"), and always powered by a quick and keen intelligence ("'M' is for 'morphine'. And 'N' is for 'Narcan. "). Some letters were harder than others. "X" finally yielded "xeroform gauze," but "P" was a problem. Taylor could come up with only "physical therapy," and he was not satisfied
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that this was "a really good example of a 'P' sound. " I left h i m p u z z l i n g over this one ( a n d "Z'9. The next day he triumphantly shared the solution., the perfect "P word" every child f a c i n g treatment f o r burn injury should have explained to them in advance was: pigskin/
Sometimes, in the face of outrage, there is hope. REFERENCES 1. Carrigan L, Heimbach DM, Marvin JA. Risk management in children with burn injuries. J Burn Care Rehabi11988;9:75-8. 2. Weimer CL, Goldfarb IW, Slater H. Multidisciplinary approach to working with burn victims of child abuse. J Burn Care Rehabil 1988;9:79-82. 3. Blakeney P, Herndon DN, Desai MH, Beard S, Wales-Seale P. Long-term psychosocial adjustment following burn injury. J Burn Care Rehabi11988;9:661-5. 4. Orr DA, Reznekoff M, Smith GM. Body image, self-esteem, and depression in burn-injured adolescents and young adults. J Burn Care Rehabi11989;10:454-61. 5. Beard SA, Herndon DN, Desai M.Adaptation of self-image in burn-disfigured children. J Burn Care Rehabil 1989; 10:550-4. 6. Mahaney NB. Restoration of play in a severely burned threeyear-old child. J Burn Care Rehabil 1990;11:57-63. 7. Sieck HS. Post-traumatic stress disorder [letter]. J Burn Care Rehabi11990;11:96. 8. White S, Kamples G. Dietary noncompliance in pediatric patients in the burn unit. J Burn Care Rehabi11990;11:167-74. 9. Sampson LJ. The development of a discharge planning index for use in a pediatric acute burn unit. J Burn Care Rehabil 1990;11:365-71. 10. Blakeney P, Portman S, Rutan R. Familial values as factors influencing long-term psychological adjustment of children after severe burn injury. J Burn Care Rehabi11990;11:472-5. 11. Jenkins HML, Stanwick RS. A survey of pediatric discharge educational programs in NorthAmerican burn units. J Burn Care Rehabil 1991 ;12:243-9.
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12. Stoddard FJ, Stroud L, Murphy JM. Depression in children after recovery from severe burns. J Burn Care Rehabil 1992;13:340-7. 13. Bjamason D, Phillips LG, McCoy B, Murphy L, McCauley RL, Desai M, et al. Reconstructive goals for children with burns: are our goals the same? J Burn Care Rehabi11992;13: 389-90. 14. Acute Pain Management Guideline Panel. Acute pain management: operative or medical procedures and trauma, clinical practice guideline. Rockville, Maryland:Agency for Health Care Policy and Research, Public Health Service, 1992; U.S. Department of Health and Human Services AHCPR publication No. 92-0032. 15. Davitz LJ, Davitz JR. How do nurses feel when patients suffer?Am J Nursing 1975;75:1505-10. 16. Quinby S, Bernstein NR. Identity problems and the adaptation of nurses to severely burned children. Am J Psychiatry 1971 ;128:58-63. 17. Perry S, Heidrich G. Management of pain during debridement: a survey of US burn units. Pain 1982; 13:267-80. 18. Brack G, LaClare LJ, Campbell JL.A survery of attitudes of burn unit nurses. J Burn Care Rehabil 1987;8:299-306. 19. Fagerhaugh SY. Pain expression and control on a burn care unit. Nurs Outlook 1974;22:645-50. 20. Sandroff R. When you must inflict pain on a patient. RN 1983;Jan:35-9, 112. 21. Walkenstein MD. Comparison of burned patients' perception of pain with nurses' perception of patients' pain. J Burn Care Rehabil 1982;3:233-6. 22. Choiniere M, Melzack R, Girard N, Rondeau J, Paquinn MJ. Comparison between patients' and nurses' assessment of pain and medication efficacy in severe burn injuries. Pain 1990;40: 143-52. 23. lafrati NS. Pain on the burn unit: patient vs nurse perceptions. J Burn Care Rehabi11986;7:413-6. 24. Watkins PN, Cook EL, May SR, Still JM. The role of the psychiatrist in the team treatment of the adult patient with burns. J Burn Care Rehabi11992;13:19-27.
VOLUME 2, NUMBER 3
t was Saturday morning in Salt Lake, a n d the people who turned out for the Sunrise Symposium on "Pain Control in the Pediatric Patient" had to be among the most grimly serious a nd frighteningly dedicated burn care professionals in the country. The depth of their commitment was proven by their very presence: unlike many members of the American Burn Association (ABA) who were still sleeping the sleep of the just, worn out after 2 intense days of nonstop presentations capped by the ABA Awards Banquet the night before, this determined group had gotten up to face the daunting prospect of institutional coffee and cholesterol at Z.O0 AM on the f i nal day of the ABA's annual meeting. Many would beflying home later that same day, scattering across the country to 30 different burn centers, large a n d small, well-known and obscure. B u t for n o w they were here, a multidisciplinary alphabet soup of qualified and caring people who 'd gathered in the hope offinding . . . something. As I poured my own cup of coffee and looked around at the near-capacity crowd, I wondered what that something would be. It was not answers. The moderators of the session made that plain in their opening remarks, freely admitting that they had no didactic advice on how to approach the problem of relieving the pain of children with burns. Instead, they suggested that we each describe our own facility's response to the problem of pediatric pai n control. So one by one each person spoke, a n d what emerged was a litany of quiet desperation: 9 We don't know what to do. 9 We can't get our doctors to see that it's a real
problem. Reproduced in part from Watkins PN, This one's for Billy, J Burn Care Rehabil 1993; 14:58-64, with permission from Mosby-Year Book Inc. Patricia N. Watkins is in private practice as a psychiatric consultant to the Burn Center at the Columbia-Augusta Regional Medical Center, Augusta, Ga. For reprints write Patricia N. Watkins, MD, P.O. Box 3726, Augusta, GA 30914-3726. Int J Trauma Nurs 1996;2:78-84. Copyright 9 1996 by the Emergency NursesAssociation. 0273-8481/96 $5.00 + 0 65/1/75251
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We use distraction a n d deep-breathing techniques, but sometimes they d o n ' t really work all that well, a n d we aren't sure what else to do. 9 We don't know what else is safe to try. 9 Our residents won'tprescribe morphine f o r kids. 9 We'll use something like Tylenol or, if it's really b ~ , Tylenol #3. 9 Iguess we really don't do much of anything. What theparticipants lacked in answers, they sure made up f or in honesty. About two-thirds of those attending had already spoken, when one person's story gave a face and a name to what could be f o u n d at this gathering. The face, swathed in bandages, is that of a 4-year-old boy, a n d the name is outrage. The voice that gave form to these things belonged to a middle-aged lady with a kind face, a face with just enough lines to let you know that she could set her j a w a n d get things done when she had to, even if they were hard. With her graying hair and polyester pantsuit, it was easy to imagine her laughing at the church picnic or wiping away a secret tear of pride at the third-grade play on Parents' Day. I did not catch her name, but she was everybody's mom and next-door-neighbor in the kind of world where you would like to live. As she began speaking she did so shyly, not making eye contact, as if not sure of her right to an opinion. "Well, on my unit, you see, I'm just the ward secretary. So I don't really have a lot of what you'd call 'clinical contact' with thepatients. I mean, I don't do dressing changes or anything." She nervously shot a quick glance around the room, as if to be certain that none of us misunderstood a n d thought that anyone as ignorant as her would be allowed to care for patients at the fine place where she worked. Apparently reassured by what she saw, she continued, her voice gathering a little strength: "So I don't really know much about pai n control. But sometimes, when I'm caught up on my work, I get to hold the children or rock them. "Her eyes were looking beyond the meeting room now, focusing on scenes f rom memory, scenes that made her lift her head a n d face us all: "When I left to come here, there was a little boy on my unit. His name is Billy and he's only 4years old. He's burned pretty badly;
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he's been there a while. And when they change his dressings, Lord, #just hurts him so, and he cries.., he cries and cries." The agitated wringing of her hands that had begun as she spoke of Billy stopped, but the slow tears continued to run ignored down her face. "After they change his dressings, I hold him. I tell him it's going to be alright, "she ended, in nearly a whisper. Pausing for a moment, she looked toward her lap and her helpless, empty hands. Her tears slowed, drying in the heat of a fierce determination. She lifted her head, and, her voice strong and steady once more, she spoke with a calm and certain defiance; "And that's why I came here this morning. There HAS TO BE something that can be done to help that child. THERE HAS TO BE. And I came here hoping to f i n d out what." Her gaze was directly on each of us, each of us responsible for ordering things that hurt, for doing the things that hurt, and therefore responsible for knowing how to stop the hurting. And except for the soft sounds of people stirring uneasily in their chairs and a low murmur of sympathy, the silence that followed was deafening .... [C]hildren and their families follow [a difficult path] in balancing the demands of normal human development with those of the equally complex process of postburn adaptation .... [A]n aspect shared by almost the entire body of published work about the needs of children with burns .... it springs from acts of omission rather than of commission. It is the peculiar and nearly complete disregard of the impact of burn-related pain on pediatric patients. It is the epitome of exactly the kind of "widespread institutional denial" about the existence of pain in patients with burns d e n o u n c e d in the newly published U.S. Department of Health and Human Services Clinical Practice Guideline 14 for the management of acute pain after trauma. Because of this denial, pain is the unexamined wild card in all of the psychosocial studies in this issue, as it has been in most studies examining issues of behavior and adjustment after burn injury for both children and adults. For example, Kravitz et al. view dreaming as a coping mechanism that a child can use to process emotionally distressing experiences. Is it coincidence, then, that 6% of the children they studied at least 1 year after burn injury still had nightmares ABOUT THEIR BURN TREATMENTS? The authors do not comment, even though the n u m b e r of children with nightmares about treatment rivals the number whose nightmares were about the injuring event itsel~ Moore et al. note the "emotional trauma" that results from "a
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lengthy hospital stay" and "separation from family members" but do not mention pain at all. They are puzzled w h e n no statistically significant differences are found between well adjusted and poorly adjusted groups of pediatric survivors of burns based on "demographic and burn-related variables." Unfortunately, none of the variables examined include any measure of the adequacy of pain control during acute burn treatment. I agree completely with the conclusion of Moore et al. that "only a prospective study can determine . . . if events associated with adjusting to burns affect the personality by making the person more withdrawn, timid, and insecure." But what variables should such a study examine? As part of the answer to that question, let me introduce you to someone whose sto W provides important clues. Ashley arrived at our burn center accompanied by simply the most bizarre document I had seen in my entire psychiatric career: the transfer summary from the hospital where she had received treatment during the first 10 days after her burn injury. The summary described a patient whose hospital course was "noteworthy for the fact that at times [the patient] has been very uncooperative and abusive to both the nursing staff and physical therapists" and w a r n e d that "[the patient] has required large amounts of pain medication." The sight of Ashley, a big-eyed, bird-boned, 8-year-oldgirl (who weighed a whopping 50pounds without burn dressings) quietly clutching a battered, blue-haired doll as she waited to be wheeled into her new room, made me wonder if the referring physician had mixed up her case with that of someone else. A manic truckdriver, maybe. Something here did not make sense. I read on. Ashley was no inner-city child, streetwise, with a smart mouth and violent sense of self-protection:far from it. The daughter of a physician and a full-time homemaker, Ashley led a middle-class life, protected by the loving boundaries of good schools, special enrichment classes for the gifted, caring adults who reasoned instead of spanked, and Sunday worship of a loving God Who listened. It was a life that left her completely unprepared for the world of modern pediatric burn care that she was forced to enter after an accident left her with second-degree burns to her legs. These burns covered 14.5% of her total body surface area. In this world, as her transfer summary described, she was given "50 mg meperidine hydrochloride (Demerol) and 2 mg diazepam (Valium) [orally] with each whirlpool debridement." She was subjected to this treatment twice a day. No one lis-
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tened when she said that she hurt. No one did anything differently when she cried or screamed. No one but her mother noticed anything was amiss when she begged to have an old doll brought to her, the doll she had carried through all the normal phases of separation in her earlier development, loving it into faceless, filthy indispensability at this time of need (although it had been retired with much proud ceremony some time ago in her real life, her life before this burn). Despite all of Ashley's attempts to communicate her needs, attempts ranging from age-appropriate to regressed, no one increased the analgesic dosage that was clearly clinically inadequate from the start. No one increased the amount of anxiolytic medication provided, although the dosage she continued to receive was so low #provided little relief of anxiety a n d no amnestic effect (making each whirlpool debridement a special enrichment class in anticipatory anxiety for this gifted student). No one thought to order that either of these oral medications be given sufficiently in advance of ashley's treatments so that there would be a chance for them to be absorbed a n d to have some therapeutic effect by the time they would be needed. No, no one pai d any attention at all. They were too busy getting the job done, trying to heal the burn wounds, trying to save her life. Until she fought. A n d kicked. A n d spit. A n d tried to bite. Then she finally had their attention. They transferred her. I will spare you the details of how our multidisciplinary team worked together to prepare Ashley a n d her parents f or her first whirlpool treatment at our burn center. It took several hours to do and would make tedious reading. But I will share with you the indelible image of Ashley that remains in my mind. It is of that moment just before being lowered into the whirlpool tank when she suddenly remembered to ask for something experience had taught her that she would need. Something that her caregivers at the other hospital had told her about and had taught her to use. Something that had helped her more than anything else to endure what she had been forced to endure to that point. Ashley politely asked for a towel that she could p u t in her mouth "to bite on to keep from screaming," than dozed off as the intravenous morphine a n d lorazepam (Ativan) she had received distracted her. Yes, Ashley, there is a n e e d for research into the m a n n e r in which poorly relieved pain affects kids with burns and the mechanisms b y which it does so. And there is a n e e d for lots of other research on the subject, too. R e s e a r c h that is not m e r e l y psychosocial but biopsychosocial. Studies that buck
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the trends in recent burn research and clinical practice to focus on the use of cognitive and behavioral techniques for pain control (hypnosis, progressive relaxation, distraction, breathing techniques, imagery, time-outs, parent participation, etc.) in pediatric patients to the exclusion of pharmacologic alternatives that are more widely available, more often a p p r o p r i a t e , m o r e d e p e n d a b l e in effect, a n d cheaper. Where are the studies that tell us which of the cognitive or behavioral techniques are most helpful for each age group? Where is the study that compares the efficacy of ANY of these techniques to that of giving a child morphine, which is the standard intervention used to relieve burn pain in adults? (This could be an interesting study: would children w h o have the option to trade each of several "timeout" cards for 2 mg of intravenous morphine apiece during the course of a whirlpool debridement instead choose to buy 90-second breaks in the torm e n t w i t h e a c h card?) H a s a n y o n e e x a m i n e d whether latency-age children can benefit from the technologic advances that permit patient-controlled analgesia? So m a n y questions, so little funding . . . . But it's not just a matter of funding, is it? It's also a matter of pain and f e a r - - n o t the patients', but our own. To be able to design the studies that will at last tel1 us what are the rational, effective options we can choose from to relieve the pain of any particular child with a burn, w e must first admit that kids are hurting. And that is hard to do, because a lot of us have had to stop hearing what the kids are saying and to stop seeing w h a t the kids are doing because it hurts US too m u c h to see them in pain. If one reviews the literature on both the topic of burn pain and that of nursing burnout, a frightening pattern begins to emerge: the pattern of staff adaptation to the trauma of repeatedly having to inflict pain on helpless patients. Burn nurses have the harrowing responsibility of providing care that is often excruciatingly painful to the patient. If there is no effective team a p p r o a c h to the assessment and relief of patient pain, the nurse must learn to ignore the immediate painful impact of his or her actions on the patient to avoid feeling helpless, angry, or guilty. 15 If the nurse must repeatedly inflict pain that he or she is helpless to relieve (i.e., if he or she is to continue to treat the patient), the nurse must learn to ignore that the patient is in pain for the sake of the nurse's o w n psychologic protection. 16-18Scientific and educational articles both reflect and reinforce this m e t h o d of coping with patients in pain through statements such as "the work of pain m a n a g e m e n t includes . . . assisting
VOLUME 2, NUMBER 3
the patient to e n d u r e pain, ''19 " d i s t a n c i n g . . . seems to b e quite useful,' "6 and "focus o n the task . . . tune out protests . . . avoid identification. ''2~ Is it a n y w o n d e r that studies have s h o w n that nurses' p e r c e p t i o n s of patient pain during treatment d o not correlate with patients' perceptions, 2~,= or that the longer o n e remains in b u r n nursing, the m o r e likely o n e is to underestimate patient pain? 22,23 Now, I a m trying not to blame nurses for inadequate pain control in children with burns. Just the opposite: it was only in the nursing literature that I c o u l d find ANY attempts to e x a m i n e the interaction b e t w e e n b u r n team m e m b e r s a n d patients in regard to pain. I think nurses and nursing researchers are a h e a d of the rest o f us in their appreciation of the importance o f a d e q u a t e pain control to patient care a n d to g o o d clinical o u t c o m e s . Instead, I believe that the self-protective p s y c h o l o g i c m e c h a nisms that affect nurse perceptions a b o u t pain operate in all of us w h o w o r k with patients with burns. I suspect that the strength of the effect o f these m e c h a n i s m s o n e a c h o f us is in inverse p r o p o r t i o n to the a m o u n t of time w e s p e n d p e r f o r m i n g clinical activities that cause patients' pain. Is it a n y w o n d e r that a w a r d secretary could see (and feel) w h a t m o s t of us c o u l d not? So, if w e are to b e c o m e any better at relieving the pain of children with burns, w e must first ack n o w l e d g e that w e are each p r o b a b l y in self-protective denial to s o m e extent a b o u t the very existe n c e of that pain. This is a frightening prospect, b e c a u s e it m e a n s starting to face the fact that w e p r o b a b l y are and p r o b a b l y have b e e n hurting little kids. A n d that's just the first of the fears w e must face to i m p r o v e the situation. The next set o f fears c o m e s from w h a t w e w e r e and w e r e not taught in our medical training. I k n o w these fears extremely well, but it w a s a little child w h o b e g a n to lead m e past them:
I heard Jennifer before I saw her. d shriek ofpure, electric agony echoed down the hallway o f the burn unit. I headed toward the hydrotherapy room at the e n d o f the corridor at a brisk walk, leaving the progress note I h a d been writing d a n g l i n g in midsentence. The only important thing at that moment was f i n d i n g out the cause o f that scream. Its twin greeted me as I opened the door to the tiny treatment area. At first it was difficult to see the source of all that sound. The H u b b a r d tank was surrounded by five o f the burn team members in f u l l reverse-isolation garb. They looked hot, harried, a n d more than a little wet. The center o f their attention was a w a i f who appeared to be in the last throes of tetanus. The bow-curve o f her back testified to the
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severity with which the swirling water stung the fresh second- a n d third-degree burns that covered her limbs. These burns covered 25% o f her total body surface area. Newly admitted, this was to be her first debridement. Newly formed, this would be our burn team 's first step on the long road o f overcoming our fears about aggressively intervening to provide p a i n relief f o r our pediatric patients. "What's the story, Dora?" I asked, catching the eye o f one o f the registered nurses present. "This is Jenny," she replied. "She's 10 years old. Thermal burns to the extremities, look mostly second. The legs are circumferential." The conversation was p u n c tuated byJenny's continued thrashing, by the voices of other team members coaxing herto "relax, breathe deep" a n d promising "the water will stop stinging if you just stay in it." They were having to back up theirpromises with a lot o f muscle just to keep her in the tank. "Haven 't y o u given her anythingforpain?" I almost h a d to shout to be heard over the din. Dora's eyes above her mask were troubled a n d frustrated. "We've already given her five [rag] of intravenous morphine. She only weighs 75pounds. Frankly, I'm scared to give her more." So was I. Like I said, this was a long time ago, at the beginning o f a long journey. B u t we did give her more. We did so out of necessity, because it was too apparent that it was wrong to cause such p a i n a n d not at least try to relieve it. We did so as a team, with myself as a physician presence, fully g o w n e d a n d beside the p a t i e n t f o r constant clinical observation. We did so with great caution, limiting our intervention to the titration o f a single analgesic, morphine. We did so patiently, suspending all treatment efforts until a n adequate level o f resting p a i n relief h a d been established. We did so with great respect f o r the legendary respiratory depressant effects o f narcotics, bringing nalaxone hydrochloride (Narcan) a n d a syringe into the room before we began, as well as a n A m b u bag ( A m b u , Inc., Lithicum Heights, Md.) a n d a crash cart (precautions that seem embarrassingly p a r a n o i d f r o m the perspective o f nearly l Oyears later). B u t we did give her more, a lot more. A n d the results were a revelation, a n epiphany, a n d a n empowerment f o r all present. A t 10 mg total dose, Jenny stopped screaming. At 15 mg total dose, she stopped crying. She relaxed in the water a n d was able to begin to converse a n d to give coherent answers to questions. A t 19 mg total dose, we were able to resume treatment. J e n n y did not appear to be in pain, but she was reporting episodic severe discomfort as burned skin was debrided away from some areas. At 23 mg total dose, she was drowsy a n d was
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dozing lightly at intervals. She was having no respiratory distress a n d was readily rousable to verbal stimuli. As b u r n team members began to shave one o f her legs as a step in debridement, J e n n y sat up slightly to see exactly w h a t was going on. Giggling, she s a n k back to rest in the tub. "Don't tell m y D a d d y what y o u ' r e doing, "she teased between chuckles. "He says I'm not old enough to shave m y legs yet. He says not till I'm 15. I don't w a n t y'all to get in trouble." We s t o p p e d administering the morphine at that point and called it a win. No matter what w e were taught in training, respiratory depression resulting from the administration of narcotics to relieve severe pain is rare. It is also completely reversible b y the intravenous or i n t r a m u s c u l a r a d m i n i s t r a t i o n of Narcan, w h i c h is available in p r e m i x e d and p r e m e a s u r e d form. Addiction is rarer still; there is simply NO evidence that so m u c h as ONE patient, child or adult, has EVER b e c o m e addicted to any substance or category of substances as a result of that substance or category of substances having b e e n used to relieve burn pain. We must k n o w these facts in our heads, at least, so that our hearts can begin to hear what the Jennifers of our experience can tell us. You see, I do not envy moderators in 1993 the job of offering answers to our hard questions about h o w to relieve the pain of children with burns, because what our heads, hearts, and experience tell us are the only answers that w e have at this point. Until the g o o d studies are done, until the most effective combinations of therapies over the course of the age and treatment cycles are known, until we have ideal analgesics that specifically relieve pain and never produce unwanted effects, we are left with only clinical experience to guide us. The good news is that, in regard to relieving the severe pain of burn injury, experience overwhelmingly supports a litany of interventions that can e m p o w e r those w h o do see the hurting and w h o want to make it stop: 9 The titrated intravenous administration of narcotics is the safest, most effective intervention you can m a k e to relieve severe or acute pain associated with b u m injury in children. 9 Children often n e e d d o s a g e s of narcotics comparable to those required b y adults with similar injuries. Some children need even more. (The D e p a r t m e n t o f H e a l t h a n d H u m a n Services Guideline TM recommends the use of the SAME m g / k g conversion factors for calculating starting doses of narcotics for children over 6 months old as for adults of less than 50 kg body weight.) 9 It is a p p r o p r i a t e to u s e b e n z o d i a z e p i n e
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anxiolytics in combination with narcotics in the treatment of burn-related pain. Given in an a d e q u a t e a m o u n t as a p r e m e d i c a t i o n before b u r n treatments, a n y of these medications can substantially reduce the amount of pain the patient actually feels by reducing the psychophysiologic contribution of anxiety to pain perception. 24 (The ones I prescribe m o s t often are m i d a z o l a m hydrochloride [Versed] a n d Ativan, b e c a u s e their brief durations of action result in little of the lingering sedation that can follow the use of l o n g e r - a c t i n g a g e n t s a n d that in turn can interfere with a child's feeding and daytime activity.) H o w e v e r , the medications in this family h a v e NO analgesic properties themselves and therefore should not b e expected to relieve burn pain adequately if given alone. 9 All of the m e d i c a t i o n s and all of the strategies that are helpful in relieving b u r n pain in adults can be a p p l i e d to c h i l d r e n with similar injuries and should b e c o n s i d e r e d w h e n d e s i g n i n g p a i n relief r e g i m e n s for children. W e h a v e to b e o v e r 21 years old to b u y alcohol in m o s t places, but there is no age limit below w h i c h the use of m o r p h i n e or h y d r o m o r p h o n e h y d r o c h l o r i d e (Dilaudid), or m e t h a d o n e or morphine sulfate (MS Contin), to relieve b u r n p a i n is prohibited or contraindicated. The bad news is that it will not w o r k for you to chant this litany alone. Achieving adequate relief of pain in children with burns requires a great deal of team effort. It is vital to the success of each child's pain-relief regimen that a specific t e a m m e m b e r be designated to oversee that child's analgesic needs. This team m e m b e r should have primary responsibility for implementing and monitoring the efficacy of an individualized analgesic regimen designed to m e e t those needs. However, to p e r f o r m these functions adequately, the designated team m e m b e r will n e e d input and cooperation from everyone involved in the child's care (including the child and the child's family) on at least a daily basis, b e c a u s e the child's needs will change over the course of time and healing. This means that it takes the c o m m i t m e n t of the entire multidisciplinary burn team to even begin to address means of assessing and improving patient pain relief. Such c o m m i t m e n t is best expressed by implementing formal team policies and procedures about pain relief. We chose something deceptively simple for our first team policy: it is unacceptable for any patient
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to have to scream in pain. In regard to procedure, we decided that whenever any patient would scream w e would stop whatever w e were doing with that patient and not resume until the adequacy of the patient's pain relief had b e e n discussed with the m e m b e r of the burn team responsible for overseeing that patient's analgesic regimen. Sounds easy, right? It took 3 years for us to m e e t this goal consistently. But the important part is that w e had a goal about improving pain relief for our patients that w e could all agree on and w o r k toward together, and we had at least a few steps planned as to h o w to begin to reach that goal. And the long-term result has b e e n that for a long time n o w the first comment visitors to our burn center usually m a k e is, "Gee, it's so QUIET!" Until the ABA gives us more guidance about policies and procedures w e should expect to see in regard to pain relief in burn centers, the best source for more information on h o w to approach the whole subject is the Department of Health and Human Services Guideline 14 that I have mentioned previously. You can obtain y o u r c o p y b y calling the Agency for Health Care Policy and Research Clearinghouse toll-free at 800-358-9295 or by writing to: Center for Research Dissemination a n d Liaison, AHCPR Clearinghouse, P.O. Box 8547, Silver Spring, MD 20907. The only excuse I can think of for a copy of this b o o k NOT to be at the nurses' station on every burn unit in this country is if the government printing office cannot k e e p up with the demand. By n o w I cannot blame you if you are wondering if relieving children of the pain associated with burns is worth all this effort. Well, w h y don't you ask a friend of mine n a m e d Taylor:
Taylor was bored. Not a little bit bored, the way you get toward the end of the long days of bedrest after autografting. Not even some bored, like you feel when you realize the "special assignments "your teacher has sent to help you keep up with the rest of the class are the most interesting thing you do, because you haveplayed the two Nintendo games available on the ward so often that you are scoring the highest POSSIBLE score every time, no sweat. No, Taylor was crashingly, totally, world-class bored. Which explained why he was hanging around the nurse's station in his wheelchair, idly flipping the tiles on an alphabet toy belonging to a youngerpatient, in the first place. Now, Taylor was a good sport. He had survived the 6-month acute hospitalization it took to heal the 68% of his body surface area covered by third-degree burns from a misadventure in the unsupervised
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use offireworks with most of his optimism about life and all of his fighting spirit intact. He had had his down days, of course, but they had been surprisingly f e w and short-lived, even through the six reconstructive admissions that followed. He had not complained about the necessity of spending two successive Thanksgivings and Christmases in the hospital to shorten the period of time he would be absent from school after surgery. And when each of his wrists was sequentially stitched to his groin for weeks on end to allow for transfer of tissue flaps, he surprised even seasoned nursing staff members with the infrequency and reasonableness of his requests. For an 11-year-old, Taylor was no wimp. Still, confined to the wheelchair, waiting for his legs to heal after still other surgeries, be was wrestling a Hulk Hogan-sized case of boredom in a tagteam match with homesickness. Desultory conversation with burn team members helpedpass the time. "These alphabet things are so lame," Taylor offered, as I wrote orders on the chart of another patient. "It's always the same things: 'A isfor Apple, ' 'Z is for Zebra.' Why can't it ever be something different?" His comments were punctuated by an exaggerated yawn and an expressive roll of his eyes in total disgust. "Well," I replied distractedly, "maybe there's room for something better. What do you think 'A' should befor?" Taylor, who periodically talked about wanting to be a nurse when he grew up (although only time will tell if this is transferential or true), thought for about a nanosecond before crowing, "Ambulance/" Okay, I thought, the choice is a little odd, but not for a kid who has been through anything close to what this one has. "And 'B'?" I asked. With a look of pure derision for the slow working of my wits, Taylor shot back "Well, 'bedrest; of course~" "You mean," I said, "like an ABC's of burn care?" "Right/" Taylor replied, enthusiasm creeping into his voice. "You could do all the ABC'S this way and make, like, a comic book/Then when a kid comes in that's burned, he could learn about everything to expect. "I had to admit it was an intriguing idea. Sofor the next hour I was drafted into the tag-team match against Taylor's boredom as we explored a vocabulary no l lyear-old should ever, ever have to study. Taylor's first associations to the letters of the alphabet were often startling ("'R' is for "respirator; 'V' isfor 'venipuncture"9, sometimes humorous ("'H' is for 'hospital food/'"), and always powered by a quick and keen intelligence ("'M' is for 'morphine'. And 'N' is for 'Narcan. "). Some letters were harder than others. "X" finally yielded "xeroform gauze," but "P" was a problem. Taylor could come up with only "physical therapy," and he was not satisfied
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that this was "a really good example of a 'P' sound. " I left h i m p u z z l i n g over this one ( a n d "Z'9. The next day he triumphantly shared the solution., the perfect "P word" every child f a c i n g treatment f o r burn injury should have explained to them in advance was: pigskin/
Sometimes, in the face of outrage, there is hope. REFERENCES 1. Carrigan L, Heimbach DM, Marvin JA. Risk management in children with burn injuries. J Burn Care Rehabi11988;9:75-8. 2. Weimer CL, Goldfarb IW, Slater H. Multidisciplinary approach to working with burn victims of child abuse. J Burn Care Rehabil 1988;9:79-82. 3. Blakeney P, Herndon DN, Desai MH, Beard S, Wales-Seale P. Long-term psychosocial adjustment following burn injury. J Burn Care Rehabi11988;9:661-5. 4. Orr DA, Reznekoff M, Smith GM. Body image, self-esteem, and depression in burn-injured adolescents and young adults. J Burn Care Rehabi11989;10:454-61. 5. Beard SA, Herndon DN, Desai M.Adaptation of self-image in burn-disfigured children. J Burn Care Rehabil 1989; 10:550-4. 6. Mahaney NB. Restoration of play in a severely burned threeyear-old child. J Burn Care Rehabil 1990;11:57-63. 7. Sieck HS. Post-traumatic stress disorder [letter]. J Burn Care Rehabi11990;11:96. 8. White S, Kamples G. Dietary noncompliance in pediatric patients in the burn unit. J Burn Care Rehabi11990;11:167-74. 9. Sampson LJ. The development of a discharge planning index for use in a pediatric acute burn unit. J Burn Care Rehabil 1990;11:365-71. 10. Blakeney P, Portman S, Rutan R. Familial values as factors influencing long-term psychological adjustment of children after severe burn injury. J Burn Care Rehabi11990;11:472-5. 11. Jenkins HML, Stanwick RS. A survey of pediatric discharge educational programs in NorthAmerican burn units. J Burn Care Rehabil 1991 ;12:243-9.
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12. Stoddard FJ, Stroud L, Murphy JM. Depression in children after recovery from severe burns. J Burn Care Rehabil 1992;13:340-7. 13. Bjamason D, Phillips LG, McCoy B, Murphy L, McCauley RL, Desai M, et al. Reconstructive goals for children with burns: are our goals the same? J Burn Care Rehabi11992;13: 389-90. 14. Acute Pain Management Guideline Panel. Acute pain management: operative or medical procedures and trauma, clinical practice guideline. Rockville, Maryland:Agency for Health Care Policy and Research, Public Health Service, 1992; U.S. Department of Health and Human Services AHCPR publication No. 92-0032. 15. Davitz LJ, Davitz JR. How do nurses feel when patients suffer?Am J Nursing 1975;75:1505-10. 16. Quinby S, Bernstein NR. Identity problems and the adaptation of nurses to severely burned children. Am J Psychiatry 1971 ;128:58-63. 17. Perry S, Heidrich G. Management of pain during debridement: a survey of US burn units. Pain 1982; 13:267-80. 18. Brack G, LaClare LJ, Campbell JL.A survery of attitudes of burn unit nurses. J Burn Care Rehabil 1987;8:299-306. 19. Fagerhaugh SY. Pain expression and control on a burn care unit. Nurs Outlook 1974;22:645-50. 20. Sandroff R. When you must inflict pain on a patient. RN 1983;Jan:35-9, 112. 21. Walkenstein MD. Comparison of burned patients' perception of pain with nurses' perception of patients' pain. J Burn Care Rehabil 1982;3:233-6. 22. Choiniere M, Melzack R, Girard N, Rondeau J, Paquinn MJ. Comparison between patients' and nurses' assessment of pain and medication efficacy in severe burn injuries. Pain 1990;40: 143-52. 23. lafrati NS. Pain on the burn unit: patient vs nurse perceptions. J Burn Care Rehabi11986;7:413-6. 24. Watkins PN, Cook EL, May SR, Still JM. The role of the psychiatrist in the team treatment of the adult patient with burns. J Burn Care Rehabi11992;13:19-27.
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