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Chronic pain in pediatric patients : an anthropological approach

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Chronic pain in pediatric patients : an anthropological approach
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Andersen, Jordan
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Chronic Pain in Pediatric Patients: An Anthropological Approach
by Jordan Andersen
An undergraduate thesis submitted in partial completion of the Metropolitan State University of Denver Honors Program
December 2014
Dr. Rebeca Forgash Dr. Nancy Sayre Dr. Megan Hughes-Zarzo
Primary Advisor Second Reader Honors Program Director


Chronic Pain in Pediatric Patients: An Anthropological Approach
Jordan E. Andersen Senior Honors Thesis Fall 2014


Table of Contents
Abstract..............................................................................3
Introduction..........................................................................3
Defining Pain.........................................................................6
Assessing Pain.......................................................................11
The Context of Pain..................................................................16
Pain Management......................................................................21
The Quality of Life..................................................................25
Case Study...........................................................................27
Conclusion...........................................................................36
References...........................................................................38
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Abstract
Chronic pain is an elusive subject in modem biomedicine. However, recent observation and research suggests that chronic pain in pediatric cases is often overlooked and generally underreported. Through a bibliographic study which focused specifically on chronic pain in pediatric oncology and in order to gain an understanding of the complexity of chronic pain in the pediatric subject, I examined the context of the condition, ultimately understanding the spectrum of contexts from the microscopic biological aspects to the macroscopic nature of the culture surrounding the subject. By taking an anthropological approach to a distinctly medical topic, I had the opportunity to analyze the issue through a complex, multidisciplinary lens. Because chronic pain in illness is so woven into the context of the patient, the impacts of this condition are far-reaching for the patient, family, and team of clinicians.
Introduction
While pediatric chronic pain is fairly widespread in the United States and Europe with as much as 25 percent of children experiencing chronic pain to some degree (Dobe and Zemikow 2013:2), it is a largely understudied condition. Moreover, pediatric chronic pain is related closely with the culture and context of the patient. Researchers therefore understand chronic pain as a culture-bound disorder. That is to say, culture has a significant influence on individual experiences of pain and plays a large part in determining whether that pain will become chronic. In pediatric patientsany individual under the age of 18chronic pain affects the individual and his or her context in a multitude of different ways, including school performance and social development: a child who misses school because of pain not only misses hours of classroom time, but they forfeit valuable time to develop and hone social skills because they are isolated by their symptoms. Similarly, there are a multitude of conditions and diagnoses that are related to
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chronic pain in this particular population. For example, pediatric chronic pain is commonly identified in cases of frequent headaches or abdominal pain or more specifically in cases of arthritis or other specific pain syndromes. This study will examine the intricacies of pediatric chronic pain through the narrative of pediatric oncology.
Pediatric oncology is a field which increasingly produces successful patient outcomes. Cancer survival rates for children have risen twenty percent since the 1980s (McClain 2011:226). However, there is still significant room for growth in managing pain in these patients. While researchers and clinicians do not consider chronic pain to be its own diagnostically unique disease or illness in terms of oncology, pain is a large part of a chronic condition and the treatment it entails. Indeed, pain is a central experience for children living (and dying) with a cancer diagnosis. There are many specific challenges that accompany an understanding and management of pediatric pain, for patients, parents, and medical professionals involved in care. An example of this is a pain treatment that interferes with treatment of cancer: some medications that can treat pain also mask signs of infection, like fever. Such challenges that will be discussed include difficulties in assessing pain, understanding the context of the patient, and developing effective long-term pain management for children. Many of those challenges can and should be met with a medical perspective that surpasses that of typical western biomedicine. Specifically, western biomedicine isolates the diagnosis from the patient, effectively reducing the experience of cancer-related pain (in this case) to a simpler model that will be treated pain using a standard progression with little or no personalization. Alternatively, physicians who treat pediatric cancer patients must consider pain as an element of the patents experience by understanding the environment of the patient and taking into consideration the patients developmental status, family, and perception of their disease as well as the anticipated outcomes.
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By approaching chronic pediatric pain through the field of oncology, pediatric chronic pain can be more closely tracked and approached from a multifocal standpoint. As each specialist, physician, nurse, caretaker, and family member sees the patient and differently, each employs a different approach. A view of chronic pain in pediatric oncology that accounts for each of those perspectives has the potential to be much more effective than any single standpoint. More specifically, the perspective of medical anthropology can be employed. Medical anthropology is defined as a biocultural discipline concerned with both the biological and sociocultural aspects of human behavior, and particularly with the ways in which the two interacted throughout human history to influence health and disease (Helman 2007:7). Medical anthropology examines a condition on both a population and individual level to determine pathways of studyand even treatmentusing biology and culture in conjunction with one another. This approach is invaluable when confronting a complex condition in a biomedical setting because it provides the necessary biocultural angle.
This study argues for a better way to manage pain in pediatric oncology with an understanding of the patient as they relate to their condition. After examining western biomedical approaches to pain, I explore alternative definitions of the causes, treatments, and effects of pain with the ultimate goal of more effective pain management and quality of life. I draw on medical anthropology for its general perspective and for a case study approach to applying the principles of the study. Ultimately, I demonstrate the most effective use of the pain assessment and management tools available to physicians. By applying these methods to a real case presented in the literature, I offer recommendations for physicians and caretakers to best serve their pediatric patients in achieving pain management and a significant quality of life, regardless of the anticipated outcome of the disease.
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Defining Pain
When defining pain, there are two general components that must be considered: the qualitative classifications and the physical, chemical processes that are involved. However, the concept of pain cannot be separated into discrete physical or psychosocial elements (Gatchel et al. Sourkes et al.). The intricacies of pain dictate that the elements function together and must be examined alongside one another. It can be easy to fall into a trap of focusing only on the physical and chemical elements of pain. Yet, the understanding of pain in a clinical setting must operate within the following set of functional paradigms. First, pain is a process. It evolves, both physically and psychosocially. As pain progresses, the bodys coping mechanisms and cognitive assessment of pain also morph. Second, pain is an experience. Rather than treating pain only as a symptom or a side-effect, chronic pain in particular must be considered as an autonomous experience. Indeed, chronic pain cannot be downplayed as anything less than an experience: its impact on the patient and on health outcomes is far too great. The third and final paradigm is that pain is both subjective and idiosyncratic. Individual variation in physiology and internal biochemistry play a major role here, but so too do the first two paradigms. Thus, there is no possible standard for morbidity or treatment and, thus, no predictable progression to analyze. In applying these paradigms, defining chronic pain can be done with relative ease, given an understanding of the elements of pain.
Historically, several theories have been developed to better understand and model pain. Early theories seemed to focus on either nerve stimulation and physical processes or subjective and emotional qualities (Gatchel et al. 2012:1-2). In the latter half of the twentieth century, Melzack and Wall introduced gate control theory, which emphasized the close interaction between psychosocial and physiological processes affecting the perception of pain (Gatchel et
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al. 2012:2). During the late 1980s, pain researchers developed the neuromatrix model, which integrates stress along with other factors into a comprehensive theory of pain (Gatchel et al. 2012:2). This theory, more than any other before it, recognizes pain as a multifactorial experience, stemming from multiple causes and environmental conditions. Today, the standard definition of pain, set forth in 1994 by the International Association for the Study of Pain, defines pain as an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage (Kriszio et al. 2013:6). Given this definition, it is prudent to consider the components of pain as equally important in understanding and managing pain for patients.
A qualitative understanding of pain is necessary for examining the physiological processes that contribute to a pain experience. Modalities for assessing pain (such as pain scales), which will be examined at length in this paper, are largely quantitative. Nonetheless, efforts to perfect a multifactorial assessment using a quantitative system have been largely unsuccessful thus far. The sensory and emotional components of pain feed off of one another. Each contributes to and perpetuates the other. For example, a childs emotional expectation of the pain that will be inflicted by a routine vaccination affects the perception of the actual pain caused by an acute minor trauma: if the child expects immense pain, they will likely experience a more severe pain reaction. Pain is therefore subjective. Ultimately, a comprehensive assessment of the multidimensional pain experience [is] indispensable (Kriszio et al. 2013:6). Moreover, pain management should also draw upon a multifactorial approach.
Chronic pain is defined as a pain response that lasts for any extended period of time. The definitions vary wildly here, but can range anywhere from days to months or years. Pertaining to chronic pain, current thinking considers chronic pain to be a multidimensional construct
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(Vetter 2012:147). As more time is spent experiencing pain, that pain becomes an increasingly large part of the patients life in a quotidian sense. Any event which occurs daily, according to common sense and experience, becomes integrated into an individuals character in some way. Moreover, the chronic pain experience both influences and is influenced by the context of the patient, which will be discussed at length below. However, at this point, it is important to note that chronic pain is especially dependent on the patient, both psychosocially and physiologically. Experiencing pain on a daily basis for a lengthened period of time forges a highly individualized situation that cannot be separated from its context. In short, the significance of a multidimensional approach cannot be understated.
With the qualitative, subjective nature of pain in mind, the physiological mechanisms of pain can be considered. In an article in the Journal of Pediatric Oncology Nursing, Katherine Patterson identifies one of the two components of pain as the psychological, physiological, emotional, and behavioral responses to the other component, which is known as nociception (Patterson 1992:121). Kriszio et al define nociception as purely biochemical and biophysical, resulting from neuronal changes as a response to actual or potentially damaging stimuli (Kriszio et al. 2013:7). It is certainly of note here that nociception is still not completely understood. Particularly in pain processing, discoveries are still being made in terms of biological functions. A basic understanding of nociception is therefore important for a paper of this scope. Nociception can be described in terms of its sub-processes, of which there are four: transduction, transmission, modulation, and perception (Kriszio et al. 2013:7). Transduction is the transfer of the biochemical response to actual or potential tissue damage (Kriszio et al. 2013:7). Injury or inflammation triggers a local cellular response which involves the release of substances such as serotonin, ATP, and potassium or hydrogen ions (Kriszio et al. 2013:7,
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7:283). Some of these substances are well documented and understood. However, multiple molecular mechanisms have been associated with producing the sensation of pain (Al-Chaer 2012:284), and not all of them are so easily pinned. Perhaps the least understood component of transduction is the specific mechanism by which these substances transform tissue injury into a pain signal, though a multifactorial molecular reaction is the most favored theory (Kriszio et al. 2013:8). What is known is that once transduction occurs, nociception becomes a neurological process, rather than a biochemical one.
Transmission is the activation of peripheral nerve fibers which process and transmit the nociceptive signal to the central nervous system, or CNS (Kriszio et al. 2013:8). This is a complex system, both in structure and function. Essentially, peripheral sensory nerves are comprised of myelinated or unmyelinated axons (long projections from the nerve cell) of the somatic and visceral sensory neurons as well as the various connective sheaths that envelope them (Al-Chaer 2012:273). These nerve fibers are called nociceptors and they are present in high concentrations in almost all tissues (Kriszio et al. 2013:8). Nociceptors are highly varied. Some may be activated only by painful stimuli and otherwise lie dormant, while others transmit the quality of painburning versus prickling, for instancebrought about by stimuli (Kriszio et al. 2013:8 Al-Chaer 2012:274 It is perhaps because of this variation that sensitization can occur. Furthermore, nociceptors can become increasingly sensitive to stimuli, exhibiting lower thresholds and a longer-lasting response to the stimulus (Kriszio et al. 2013:8-9). In this way, sensitization can play a major role in the transition of pain from acute to chronic.
Modulation and perception of pain happen in the central nervous system. Once the injury or tissue damage has been transmitted through nociceptors, the information is modulated in a section of the spinal cord close to the site of injury. Modulation is a complex process whereby
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inhibitory interneurons, stimulated by substances like serotonin, inhibit the pain signals before they move farther up the spine or to the brain (Kriszio et al. 2013:9-10). This sort of mediation effectively shields the higher central nervous system (i.e. the brain) from processing every painful stimulus fully.
Once this modulation occurs, perception takes place, which is a nociceptive projection pathway [that] is intraspinal (Kriszio et al. 2013:10). There are several ascending spinal tracts which aid in the organization, categorization, and ultimate perception of pain. Each spinal tract is a section of the pain pathway and thus has a different functional piece. The paleospinothalamic tract is connected to the limbic system and exhibits slower responses. Researchers believe that this tract is responsible for behavioral changes that lead to avoidance of further injury (Kriszio et al. 2013:11). The brain itself is the terminus of the projection pathway for pain. The brain is, ultimately, where culture, experience, subjective perceptions, and psychosocial context becomes vital in the pain experience. There is clearly much variability and individuality in the pain experience at all levels with regard to both the quantitative and qualitative aspects. This is the root of the challenge associated with effectively assessing and managing pain, including in situations of pediatric oncology.
When examining chronic pain in pediatric patients, it is important to realize that while the neural mechanisms in a child may be largely similar to those of an adult, the fundamental differences in the immature and mature pain systems suggest that a number of key differences are likely to arise in the incidence, pattern, time course, and treatment of chronic pain in children (Fitzgerald 2011:19). There are many possible mechanisms by which a childs pain becomes chronic. One mechanism seems to be insufficiently treated acute pain leading to permanent sensitization of the CNS (Kriszio et al. 2013:20). In a recent study, Erpelding et al.
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suggests that the habenula, a small brain structure, likely plays a role in pediatric chronic pain (Erpelding et al. 2013:239). Chronic pain in pediatrics is an area which is still relatively unexplored and not well understood. Simply put, however, the nervous system seems to be extremely resistant to switching off pain (Al-Chaer 2012:285).
In pediatric oncology, pain is certainly a part of the patients experience. However, the distribution of pain is more often related to medical procedures than to the pain caused by the disease itself (McClain 2011:211, Patterson 1992:119). Approximately 90 percent of all cancer patients experience pain at some point during the course of the illness (Hjermstad et al. 2012:71). Indeed, pain is a significant factor in the overall treatment of the patient and his or her disease. Patterson differentiates the types of pain in childhood cancer, organizing them into four categories: cancer related, treatment related, procedure related, and miscellaneous, which includes bedsores and incidental trauma or illness (Patterson 1992:120). Because pain in this context can be so complex, it is often difficult to systematically manage the pain. The ability to effectively assess pain and find treatment options that are compatible with the patients situation is a significant barrier to pain management.
Assessing Pain
The ultimate motivation for studying pain is, without question, to better equip practitioners to manage that pain for their patients. It has been established that pain is a multifocal experience that is both quantifiably objective and qualitatively subjective. Logically, the assessment of pain in children is a multifaceted process (Patterson 1992:119) in order to combat pain in every aspect. Brenda C. McClain, faculty at Yale in the Department for Anesthesiology, calls for pain assessment to be global and standardized for consistent comparisons throughout the care of the patient (McClain 2011:212). Not only is it important for
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the single patient to receive standard care throughout the course of illness, but on a much larger scale, a universally utilized pain assessment system baseused with consideration and adjustment for cultural and contextual variationcould greatly benefit global pain research as well as the wellbeing of patients world-wide. Unfortunately, medicine has been largely unable to create a single, comprehensive, universal assessment tool. However, there are a multitude of tools that can be properly combined to create the desired effect of successful pain assessment.
Even without considering age-related development, it can be difficult to determine what kind of scale to use for a patient to measure their pain. Classicallyas anyone who has ever spent time in a hospital setting in pain will relatea numerical scale is used. This particular scale is a unidimensional pain intensity scale and has proven largely ineffective (outside of short term, snapshot situations, like urgent care or emergency rooms) despite ease of use and familiarity among doctors and other health professionals (Vetter 2011:65). One study found that major defects were found in pain description (Amaout 2010:424). Such defects in pain description directly hinder the success of pain management and therefore must be addressed by physicians.
So what precisely makes for an effective multidimensional scale or matrix of scales? Patterson states that:
A comprehensive assessment of childhood pain should include: nature of noxious stimuli; physiological, behavioral, and emotional responses; the patients self-report; environmental and situational factors; parental opinions of the childs current status; and the childs reactions to previous painful stimuli (Patterson 1992:120).
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Moreover, Vetters criteria include reliability, validity, responsivity, interpretability, and feasibility (Vetter 2011:65). Essentially, then, a comprehensive pain assessment must account for the complexity of the pain itself in addition to the context of both the pain and the patient. Additionally, assessment must pave the way for effective pain management.
Those criteria, however, are not the only essential pieces. The fact is that age and developmental factors do matter when choosing an appropriate assessment. Often, particularly with younger children, a burden falls on the parents and nurses in helping the patient self-report and communicate their pain (Wong 1994:69). As such, assessment tools must not make that burden any more significant. While pain assessment may be based on the patients chart, observations, or proxy ratings (like those from parents), these methods have been shown to decrease in accuracy as pain levels increase (Hjermstad et al. 2012:76). Thus, when possible, it is of high importance to elicit pain information from the patient. For these reasons, an assessment method which allows direct communication between the patienteven a very young oneand medical professionals is highly beneficial.
As previously discussed, the perception of pain is highly individualized and is therefore based on a wide array of contextual factors. These can include age and cognitive level, previous pain experiences, ability to control the environment, their expectations regarding potential recovery, and the relevance of pain or the disease causing pain (Vesel et al. 2011196). In order for a unidimensional pain scale to be functional in a clinical setting, baselines must be established for each individual patient. Physicians and other providers must understand that the worst pain they can imagine (a 10 on the number scale) cannot be compared with the 10 on the scale of a young child. In fact, as disease and treatment progresses, that pain scale has the potential of being dynamic: each new or painful procedure or experience could become the new
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worst pain. Pain, as discussed, is a process. Assessment, therefore, must also be a process in order to meet the needs of the patient.
The assessment of pediatric pain conventionally falls into three basic categories: patient self-report, health-care provider or parent observation, and physiological (Vetter 2011:64). A combination of these categories should be used to achieve the most accurate measurement of pain, as none are effective alone. While a number scale may be able to provide a snapshot so that an appropriate action can be taken (i.e. administering a dose of opioids), clinicians must create a more comprehensive understanding of the pain experience for their patient with a bigger picture in mind.
There are two multimodal assessment tools which perform at this level. While they are generally used in diagnosing pain disorders (Wager et al. 2013:43), both tools provide an ideal conceptualization of a patients pain experience. First is the Pain Questionnaire for Children and Adolescents (Wager et al. 2013:43). Also known as the PQCA, this tool was originally developed in Germany and is available in an English translation. The components of the PQCA are: sociodemographic data and family history, pain characteristics, pain triggering and pain modulating factors, previous examinations and previous therapies, pain-related impairment, and cognitive-emotional and behavioral effects (Wager et al. 2013:43). There are different versions of the assessment based on age and cognitive development. Additionally, numerical scales are part of the questionnaire, in order to determine pain-related disability and pain perception (the typical l-to-10 scale). Boris Zernikow, one of the developers of the PQCA, recognizes the extensive nature of the questionnaire and its associated burden on the patient, parents, and medical staff and recommends the full version be used for the initial assessment with the intention of following up every three months with a shorter version (Wager et al. 2013:43).
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The other multimodal tool is the pain diary. This tool is incredibly useful for an assessment of the efficacy of pain interventions and the general progression of the pain experience over the course of illness and treatment (Wager et al. 2013:44). The ideal pain diary includes the main parameters of pain (intensity, frequency, and duration) as well as trigger factors, consequences of pain, pain medication, emotional wellbeing, impairment, attendant symptoms, and applied coping strategies (Wager et al. 2013:44). Ultimately, this tool puts power into the hands of the patient. This benefits both the physician and the patient because, health care providers cannot quantify the patients subjective experience of pain; only the patient can do this (Patterson 1992:121). By giving some control over to the patient in assessing their pain, the subsequent management and ultimate quality of life are all heightened, a concept which will be explored in depth later.
A note here should be made about cross-cultural communication as it relates to the assessment of pain. In his paper on the subject, James Hallenbeck states that, pain as an experience is inexorably interwoven with culture.. .for humans, language is essential in giving voice to such experience (Hallenbeck 2012:19). Superficially, this applies to patients who may find difficulty in expressing their pain in the physicians native language. This is an issue that, when treated sensitively, can be remedied using translation services. However, on a deeper level, there is also a cultural disconnect between the highly technical jargon of the physician and the lay terms of the patient. This issue must be treated by the physician with a certain degree of finesse and understanding. It is of vital importance that the physician take care to communicate in such a way that is accessible to the patient and family and to take measures to fully understand the communications of the patient. For instance, a physician should ask follow-up questions following a patients description of their pain or symptoms. There is simply no reason that a
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breach in communication, which can be detrimental to the treatment of the patient, should be present, particularly on the physicians end. Moreover, it is incumbent upon the physician to reduce any communication difficulties that come up over the course of contact with the patient.
The Context of Illness
As demonstrated in previous sections, understanding the context of the patient and their illness is the keystone effort that physicians can make toward treating chronic pain in the pediatric oncological population. Certainly, when faced with a diagnosis of cancer and the accompanying symptoms, it can be easy for a physician to treat the medical issues in isolation. This results in a paper patient: a set of diagnoses and symptoms that are clear from the individual nature of the patient. Superficially, this might make treatment easier, allowing the physician to create distance from a potentially emotional and complicated situation to reach the treatable issues. However complex the flesh patient, though, the context of the illness and the environment of the patient bring a dimension of understanding to the physician in their provision of care. The importance of the context itself cannot be understated at any level of care.
Just as the pain assessment is integral to the physicians understanding of the pain experience, a patient history can provide a comprehensive view of both the symptoms and the patient in relation to the environment and context of the illness. In short, without the base of a proper symptom history, the physician cannot hope to build a successfully pain management plan. A good pain and symptom history includes a systematic symptom survey, symptom-specific history, oncologic history, general medical history, psychosocial and family history, and a spiritual review (Madden et al. 2005:231). B.C. McClain, of Yale University School of Medicines Department of Anesthesiology, justifies the necessity of this information, calling for
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a review of the psychosocial, social, and oncological records, and pointing out that this information may reveal co-morbidities that can impact the patents well-being and pain experience (McClain 2011:212).
The context of a childs illness and subsequent pain is involved and interwoven. By societal nature, a child is not autonomous and is thus embedded in an interactive network that provides support and developmental growth. When a child becomes sick (due to the debilitating pain of a cancer diagnosis, for the purpose of this paper), that network inevitably shifts, becoming smaller in some places while other pieces become more important. There is a certain interaction that takes place here: pieces of the childs contextschool, friends, familyare all heavily impacted by the child in a state of illness. At the same time, those same facets of the childs life play major roles in the illness of the child and the childs perception of their situation.
As stated in Mi-Young Ryees paper on psychiatric considerations in pediatric chronic pain, difficulties managing chronic pain in pediatric populations can lead to significant impairments in school functioning (Ryee 2011:91). Indeed, school attendance and performance are among the first pieces of a childs life to fall out of balance when chronic pain becomes prominent. However, the school environment also provides a safe and normal haven
(Sourkes et al. 2005:364) that can be an escape from the environment of hospital treatments, clinicians, and even family. While it can be difficult to sustain formal education through the progression of disease, it is also very important that the care team makes an effort to facilitate a childs attendance at school for as long as possible. This requires coordination between clinicians and educators. Ultimately, school itself provides a tangible sense of direction and achievement. Hope, which will be discussed in a later section, is correlated with a forward-facing approach; that is to say, when a child has something to look forward to or a goal to work toward, that child
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is motivated with a future vision. School, therefore, has the potential to push a child toward a goal, thereby giving them a sense of success in the future. This is in stark contrast to the clinical medicine that becomes so prominent in the life of a sick child, where they have very little control over the circumstances or direction of their illness or the associated pain.
Aside from academics, the other major defining piece of the context of a childs life is the social aspect. It is not uncommon for children to maintain two categories of friends: those from the healthy world of school and neighborhood, and those from the hospital, clinic, and special camps for children with similar conditions (Sourkes et al. 2005:370). Children have the ability to empathize with one another: a child facing a cancer diagnosis will often be able to more easily relate with another child who has a similar diagnosis than they would with a typical child. Illness can be incredibly isolating, hindering a child from experiencing their community, particularly on a social level. Maintaining relationships is difficult for both the sick child and their healthy peers, yet it is also incredibly necessary. In pain disorders, research shows that peers encourage pain-free behavior, showing less attention to the ailing child during pain episodes (Kriszio et al. 2013:29). The clear correlation here, between patients and their social network, is strongly indicative of the sheer strength of the social context of a patient in its ability to contribute to either a positive or negative outcome in terms of chronic pain.
Even by quantitative measures, the biggest part of the context of a pediatric oncology patient is the family. Particular emphasis is placed on the parents, given their burden in acting as a medical proxy for their child in every stage of illness. Pain associated with a chronic condition is a familial stressor. One survey of 533 parents of chronically ill children showed 45 percent of those parents to have lower health-related quality of life: these parents found their sleep, social functioning, daily activities, emotional health, and vitality to be impaired by their childs
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condition (Vetter 2012:149). While there is no evidentiary support that divorce rates increase due to the impact of childhood cancer (McClain 2011:227), it is clear that a chronic condition affects the entire family and creates general stress for the entire family unit, however that may be defined by the patient. While a good deal of attention is paid to the parents of a chronically ill patient, the healthy siblings are just as heavily impacted. Because of the excess attention (often unknowingly) paid to the child who is ill, healthy siblings may experience behavioral, psychosocial, and physical problems (McClain 2011:227). Under the circumstances of chronic illness, clinicians have recently begun calling for focus on the siblings in order to mitigate these issues and because pediatric professionals recognize the importance of the sibling to the sick child (Marques da Cunha et al. 2010, Sourkes et al. 2005:371). This evidence all ultimately supports a family-centered approach to chronic pain in pediatric oncology at every level of care.
Psychosocial development is affected when a child faces a chronic illness and the pain associated with it. Gallo and Westhoff recognize the comprehensiveness of the diagnosis and thus call for a comprehensive approach by clinicians, saying:
To offer the sick child and its family biopsychosocial care of optimum quality and to support them as they cope with the disease and the crisis, pediatric oncology must supplement medical treatment and care with a wide range of psychosocial approaches (Di Gallo and Westhoff 2011:226).
While child psychologists in hospitals are a default first line of treatment for the psychosocial aspects of illness, doctors and nurses must also consider the patient beyond the diagnosis and biomedical treatments. Nurses, for instance, have a great deal of contact with the patient and must therefore be willing to breach the psychosocial aspects of care for the patient and, often the family. Ultimately, there is no static state of psychosocial health over the course of a chronic
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illness: emotions, coping methods, and outlook are all constantly changing for the patient and their family. It is the clinicians responsibility to work alongside the psychologists) to provide non-fragmented continuous care that covers the biopsychosocial needs of the patient and family. Like some physical after-effects of illness, the future psychosocial status of the patient must be considered, particularly if remission or cure seems likely. The Damocles Syndrome is a general term for the long-term anxiety and fear that plagues many survivors of childhood cancer (McClain 2011:226). Essentially, there is apprehension that the cancer will come back, and that fear can create problems at school and work, depression, anxiety disorders, unpleasant memories, and a general wariness in creating goals for fear that a cancer relapse will interfere (McClain 2011:226, Di Gallo and Westhoff 2011:236). Counseling during critical parts of the illness itself can mitigate these problems, if clinicians have the foresight to consider long-term psychosocial health.
Medically, the pain associated with cancer simply cannot be treated in isolation. As mentioned previously, one of the sources of pain over the course of illness is that which is associated with treatments or procedures. There is extensive clinicaland especially nursing literature regarding the identification, treatment, and prevention of medically-caused symptoms which can often cause more pain than the disease itself (McClain 2011:211), and is therefore of more concern for the care team in alleviating pain in this population. B.C. McClaine states that, in performing painful procedures, health care providers often under-utilize pain management methods (McClain 2011:214). Beyond the pain of hospital procedures, long-term therapy-related pain can persist long after the cancer itself is gone. One prime example is phantom limb pain due to amputation. This pain syndrome and others like it are neurological in origin and require a different approach than pain specific to the cancer itself (McClain 2011:216). Chemotherapy,
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radiation, surgery, and medications can all contribute to a childs pain experience by creating painful symptoms such as vomiting, sores, and incision or injection site pain (Madden et al. 2005:232). These bring a challenge in the management of pain and stand to illustrate the complexity of managing and understanding the pain experience in the pediatric oncological population.
Pain Management
There is extensive literature regarding pharmaceutical interventions in pediatric chronic pain due to cancer. There are entire papers devoted to which specific drug combinations will best treat certain types of pain in certain types of patients with certain types of cancer. Ultimately, these papers are intended for pharmacists and practicing clinicians and perpetuate the isolationist view of pain symptoms. Rather than rephrase those papers to create a long list of analgesic methods, this section will be used to tease out the more general concepts in managing pain in the pediatric oncological population, including the use of methods other than specific drugs.
That being said, there are ways in which the body copes with pain regardless of a physicians intervention. Experience, cognition, and hope are all coping mechanisms that can have a significant impact on the experience of pain. Given that pain is a subjective concept, these mechanisms manage pain in the patients higher level perception, rather than at the molecular or cellular level, which is the target of pharmaceutical interventions. Passive coping strategies where the patient perceives that they have no control over the situation have been shown to be positively correlated with increased pain symptoms, high levels of impairment, and increased long-term depressive symptoms (Wager et al. 2013:39). Problem-focused coping, on the other hand, aims to change the circumstances and in most cases results in active pain coping behavior (Kriszio et al. 2013:26). Simple as it may appear, a situation where the patient feels
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empowered to be in control gives that patient a sense of autonomy in a setting where there is very little autonomy to be had. A childs awareness of their situation can give rise to a loss of relationships, identity, and control (Sourkes et al. 2005370). The physician has the obligation to create opportunities for even pediatric patients to exert control over their situation. One very simple example is allowing a child to choose which arm in which to receive an injection. Although it is a small gesture, it can provide an essential scenario for a child to take control, thereby reshaping the entire experience and even the pain associated with it.
In the same vein, hope is a concept that has the potential to play a large part in coping with a chronic diagnosis. Certainly, this must be approached with caution: a clinician must balance hope with realistic outlooks. Hope alone can blind a patientor a caretakerto the possible negative outcomes of the illness. However, truth-telling and maintaining hope need not be mutually exclusive (Penson et al. 2012: 390). In fact, when a sense of hope is instilled in the patient alongside treatments and empirical knowledge from clinicians, that sense of hope has been found to be negatively correlated with pain symptoms in cancer patients (Penson et al. 2012:384). Overall, hope is a coping strategy that is related to the placebo effect, which is, in turn, a valuable asset for clinicians. Placebo, which is well-summarized as delivering a context without the substance (Polio and Benedetti 2012:331), is any treatment, medication, or practice which triggers changes in neural activity and improve the efficacy of the clinicians efforts (Polio and Benedetti 2012:332). Put simply, that delivered context is an important piece of any symptom management methods.
Pharmaceutical methods are the staples of the western biomedical physician in treating pain symptoms, regardless of the causative agent. Because it staunchly believes pain management to be a universal human right, the World Health Organization (WHO) has a set of
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published guidelines for pain management which many physicians use globally. This analgesic ladder, developed in 1998, outlines a four-step progression from non-opioid analgesics through weak and strong opioids and then on to invasive therapy (Vesel et al. 2011:197). Although pain symptom management must ultimately be a process tailored to the individual patient, the WHO analgesic ladder is certainly a good place to start. In one study, pain was the presenting symptom in 62 percent of children with new cancer diagnoses (Vesel et al. 2011:194), indicating that pain management for this population may have to start on a higher rung of the WHO ladder in order to provide adequate relief. A German pain management survey which examined the effectiveness of the WHO ladder in pediatric oncological pain found that step 3 (strong opioids) was the most commonly used and the escalation from step 2 (weak opioids) to step 3 was the most common treatment shift within a single pain cycle (Zernikow et al. 2006:589). This study supports a pain management regiment which aims to provide as much relief as possible, where side effects of the pain therapy come second to analgesia. The treatment of pain in this context differs from that in a context of other categories of chronic pain in adults and children. H.S. Smith et al. recommend the use of nonopioid analgesics as a first-line option or at least before opioids to treat nociceptive pain (Smith et al. 2012:472). As discussed earlier, a significant portion of the pain experienced by pediatric patients with cancer is related to the treatment they receive and the procedures they endure. Therefore, it is the physicians responsibility to provide analgesia adequate enough to combat that pain and aid in the healing process.
In clinical practice, there are significant barriers to adequate pain symptom treatment and a number of those hindrances stem from misunderstandings about medications and treatments on the part of the clinicians and the family. Most notably, there can be fear and reluctance in prescribing any opioid to a pediatric patient in a certain cautiousness regarding the side effects of
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potent opioid medications such as overdose, respiratory depression, addiction, and substance dependence (Vesel et al. 2011:196). These fears are largely unfounded and based on a lack of education. Patterson states the undertreatment of pain in children to be attributed to five erroneous assumptions: there is a correct amount of pain for a given injury, childrens nervous systems are too immature to experience pain, children metabolize opioids differently, children have no memory of pain, and children become easily addicted to narcotics (Patterson 1992:122). Patterson also simplifies the difficulties on the part of the clinician, saying that physicians and nurses tend to have preconceived notions about how much pain each procedure should produce without regard to the subjective nature of pain and if clinicians were to dispose of those preconceived notions, they would make great strides in alleviating pain for all patients (Patterson 1992:121). Thus, effective pain management is linked not only to an adequate assessment, but also to the clinicians understanding of the context and nature of the patients pain.
Certainly, choosing a pharmaceutical treatment is based both on guidelines like those from the WHO and on the patients unique status. There are benefits and detriments (like side effects) which accompany each option and it is up to the physician as well as any support staff (such as those in the pharmacy) to determine the best course for the patient. Typically, the nonopioid analgesic options include nonsteroidal anti-inflammatory drugs such as Ibuprofen, salicylates like Aspirin, and acetaminophen which is commonly known as Tylenol (Lee 2011:319). If feasibly effective, these analgesics can be used alone, but they can also be used in conjunction with opioids. There is another class of nonopioids which are specifically used as adjuvant therapies to increase the efficacy or negate the side effects of opioid or nonopioid treatments (Lee 2011:326). Strong and weak opioids are typically used in the WHO ladder steps
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two and three. The most important feature of pharmaceutical pain intervention is around the clock administration, rather than giving medications as needed (McClain 2011:222). This creates a situation where breakthrough pain (sudden, severe flares) are less common and pain management is generally more effective with less stress for the patient. Along these guidelines, side effects of the opioids such as sedation and constipation are to be expected but can be managed quite easily.
Aside from pharmaceutical interventions and aforementioned psychological treatment, complementary and alternative medicine (CAM) can be used in addition to typical biomedical practices in what is known as integrative therapy. With the prevalence of pediatric CAM use ranging from six to 91 percent in 2010 (Punja et al. 2012:187), its use has been gaining particular popularity among oncology patients. In integrative therapy, the clinician combines the best of evidence-based, complementary therapies and mainstream care to deliver a multidisciplinary approach to evaluate and treat the whole person (Chokshi and Kelly 2012:152). Ultimately, the goal is to fill the gap in treatment where biomedical therapies fail, namely in alleviating symptoms and side effects. Additionally, at the heart of the model is family-centered care (Meyer n.d.:96). This focus allows the family to exert some control over the treatment regarding the whole patient: context and symptoms, creating an ideal model of care.
The Quality of Life
Arguably, the pinnacle responsibility of a clinician who is treating pain in the pediatric oncology patient is to reach and maintain a certain quality of life for the patient. Certainly, assessment, contextual understanding, and pain management are all landmarks in this process; however, those efforts are for naught if the patient or family feels that the quality of life has been sacrificed for any reason. At all stages through the progression of illness, the physician must not
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only assess the efficacy of treatments and symptom management, but also the health-related quality of life (HRQoL). Self-report of this assessment is important because it depends on the patients unique experience regarding their illness, treatment, and their perceptions of the future (Vetter 2012:152). An assessment of the HRQoL can provide insight for the physician so that decisions can be made regarding the quality of care and the methodology of the medicine being delivered.
Oncology is largely regarded as a medical field that focuses on helping patients achieve remission and increased longevity. However, this outcome is not always possible. Though the number is decreasing as medical technology improves, cancer still kills children: cancer was responsible for four percent of childhood deaths in 1999, following unintentional injuries (22%), homicide and suicide (8%), congenital anomalies (12%), SIDS (5%) and other causes (Sourkes et al. 2005:352). Yet, because of the nature of cancer in its time and increasing medical dependence over the course of disease, cancer patients make up a large fraction of pediatric patients who receive palliative care.
Pediatric palliative care in oncology aims to deliver competent, compassionate, and consistent care to children living with cancer and their family members (Foster et al. 2010:206). A more general definition of the field of pediatric palliative care is:
Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social, and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision for respite, and care through death and bereavement (Sourkes et al. 2005:351).
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Essentially, the goal of palliative care is to add life to the childs years, not simply years to the childs life (Sourkes et al. 2005373). Clearly, this is a very important mode of care, particularly when the outcome of the illness becomes bleak with a terminal diagnosis. However, it is estimated that less than one percent of approximately five thousand children who die each year receive any type of palliative care services. Palliative care in pediatrics is growing, but it is still a very small field in medicine. This is likely not out of a sense that palliative care is not necessary for this population, but rather that there is a general feeling among many clinicians (and parents) that to transition to palliative care is to give up (Vesel et al. 2011:196). The mode of care in hospice situations varies greatly from that of a curative origin and physicians and nurses often feel unprepared for the new challenge which accompanies palliative care (Stayer 2012:350).
That said, pediatric palliative care is a culmination of the care brought forth throughout treatment: clinicians must still assess and treat symptoms (pain) and the context of the patient, from the family to the childs bereavement and psychological status. While children are missing normal development milestones by being isolated in the hospital, they are also forced to confront life issues prematurely, and conceptualize things that would ordinarily lie beyond their grasp (Sourkes et al. 2005:360). Because of this uniquely challenging situation, clinicians must consider the way they handle themselves and deliver to the patient the best, most compassionate care possible. The next section will examine a case study regarding one familys experience with pediatric palliative care.
Case Study
The following is a case study is taken directly from Understanding Pediatric Palliative Care: What it is and What it Should Be by Eileen R. OShea and Robin Bennett Kanarak. The
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study was published in 2013 but presents the story of David Kanarak, Robin Bennett Kanaraks son, who was diagnosed with acute lymphoblastic leukemia in 1995 when he was 11 years old.
David was playing with his younger sister, Sarah, in our kitchen before dinner. Suddenly and with no apparent cause, he fell down. I went to check on him and asked what happened; he said that his legs buckled. Over the next several hours he began limping and complained that his hip was very sore. By the end of that week, he couldnt walk. Our pediatrician was perplexed. David had just turned 11 and had had a complete physical examination a week before. Everything had appeared normal. Now the ache in Davids hip was intensifying every day and soon he was crying out in pain. Benign conditions were ruled out one by one. The pediatrician ordered a computed tomography scan. Six weeks after the onset of the mysterious pain, Davids father, Joe, and I learned that the results of the scan were suspicious. The pediatrician then referred us to a pediatric oncologist, who performed a bone marrow biopsy.
The biopsy indicated that David had acute lymphoblastic leukemia. The oncologist immediately sent David to a childrens hospital to begin chemotherapy. David achieved remission within 3 weeks and, by mid January, he returned to school. For the next 2 years he endured an intensive chemotherapeutic regimen.
Three years after the initial diagnosis, things had more or less returned to normal. David achieved his Bar Mitzvah and won the principals award on graduation from eighth grade. During the summerwith the approval and encouragement of his pediatric oncologistDavid, then 15, went to sleep-away camp for a month. This was his first time away from home since his diagnosis, and


he was nervous. So were his father and I. When he came home, we noticed that he was limping and supporting his hips with his hands. I took him to the oncologists office the next day. His blood work was normal, but his mobility began to deteriorate. He could barely tolerate his first day as a freshman in high school. Within 2 hours the school nurse called, and when I arrived to pick him up, I noticed that David was pale and short of breath. I immediately brought him to the oncologist, where another bone marrow biopsy revealed that the disease had returned.
The medical team that had treated David initially determined that his body was too weak to endure long-term chemotherapy. The pediatric oncologist recommended that David be taken to a prominent childrens hospital in another state to discuss a bone marrow transplant and a new treatment plan. We followed this advice immediately. Joe and I took David to a consultation with the esteemed head of the bone marrow transplant team. Of course, we had high expectations and were eager to hear new recommendations.
The meeting did not go as we hoped it would. As soon as formal introductions were exchanged, the surgeon plunged into a discussion of the complications and mortality rates associated with the risky bone marrow transplant. I turned toward David, who had covered his ears with his hands; he was looking down and shaking his head in disbelief. Joe and I were aghast. How could such a highly skilled physician be so insensitive to the power of her words and the effect they might have on our young son?
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We asked David whether he wanted to leave the room. He did. At the close
of the meeting, Joe and I were bewildered. If the head of the transplant team could be so unaware of the effect of her words, then what could we expect from the rest of the clinicians wed encounter there? We decided not to entrust our sons care to that institution.
During the entire course of Davids illness and treatment, his father and I were always aware that he could lose his life. At the age of 11 and with no knowledge or experience of cancer, David didnt fully grasp the seriousness of his illness; in fact, he was relieved when he learned his diagnosis. Finally, there was a name for the cause of his problems. When Davids cancer recurred at age 15, his understanding was significantly more advanced. By this time he had learned about all the medications and their side effects. Devastated that he was going to have to undergo more treatments, he asked, Why me? What did I do wrong? I felt at a loss for words. I wasnt prepared to answer this question.
David endured more chemotherapy to achieve remission, and then underwent a stem cell transplant. For a month afterward he remained in strict isolation. Soon our usually even-tempered and amiable son was becoming depressed, easily agitated, and uncharacteristically confrontational. The members of the interdisciplinary team, which included oncologists, nurses, and a child psychiatrist, initially surmised that this was normal behavior for someone Davids age who had been placed in isolation, but it was obvious by the second week that there was something more going on. His father and I again sought professional guidance.
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The child psychiatrist spoke to him but was unable to coax him into sharing what was troubling him. David resented the psychiatrists attempt to intervene and eventually fired him. When we asked the psychiatrist to try again, he refused. Meanwhile, Joe and I and the rest of the team members were becoming more concerned over Davids mental state.
When we approached Davids favorite physician to ask him to talk with our son, his body language telegraphed his discomfort. It was an uncomfortable moment for us, too. We felt that David needed professional help in dealing with his emotions, and we werent qualified, ourselves, to handle this difficulty. But the physician didnt offer an explanation for his reluctance. We wondered how this highly skilled expertone who could navigate through all of the medical complexities of treating cancercould be so ill equipped in the face of a teenagers psychological struggle. With a sense of desperation, we pleaded with the physician until he relented.
Three hours later, mentally exhausted, the physician emerged from Davids room and told us that our son had many questions about death and his own mortality. The physician didnt divulge the details, but it was obvious that the discussion was much needed. We hesitantly entered Davids room, not knowing how hed reacted to the emotionally sensitive conversation. We were astonished to find him smiling and calm, in a peaceful state of mind. He was ready to play a game!
In the first 6 months after the transplant, David did well. In the seventh month, he developed graft-versus-host disease and was treated conservatively at
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home. Six weeks later, his treatment was intensified with intravenous prednisone, which further suppressed his immune system and left him vulnerable to infection. Soon after this treatment began, David experienced worsening symptoms and needed to be hospitalized. As long as we were with him, David remained calm and good-humored while coping with the treatments. Our fear was under control.
In the last 2 weeks of his life, David suffered seizures and severe respiratory distress. The health care team members suspected that David had contracted an aspergillus infection due to his immunocompromised state (a suspicion that was later confirmed by autopsy). Over the course of several days, Davids oxygen levels declined and he required intubation to maintain a normal level, but even that intervention didnt change the fact that his vital organs were beginning to fail. David was heavily sedated. It was during this time that David was transferred into the pediatric intensive care unit and his condition deteriorated quickly. There was a noticeable change in the doctors and nurses behavior and body language. They knew how serious the situation was. Tense and distant, they always hurried in and out of the room and avoided eye contact with Joe and me. They didnt speak to us; they spoke among themselves as if we werent there. We sensed their fear that David was going to die, and this terrified us. I sensed that this was the beginning of the end.
I asked the chief resident what Davids chances of survival were, and if he did survive, what kind of quality of life we could expect. The physician reluctantly admitted that if he survived, he would need several organ transplants and would be ridden with catastrophic health issues throughout the remainder of his life. Until
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then, none of the clinicians had initiated a conversation about the possibility of David not surviving, nor had anyone raised the question of his probable quality of life if he did survive. Once Joe and I understood the likely outcomes, we were able to come to a decision: we decided not to escalate care. The primary focus of care was to be supportive, with an emphasis on comfort and pain management. We also decided to forego cardiopulmonary resuscitation.
Over the course of several hours on his last day, Davids heartbeat began to get slower and slower until it finally stopped. Joe and I were at his bedside (OShea and Kanarek 2013).
This study illustrates several major pieces of the pediatric oncological process from the unique perspective of a parent who is also a clinician. From initial diagnosis to in hospital treatment to the eventual decision to focus solely on palliative care and end-of-life considerations, there were several areas in the physicians responses and actions that could have been improved to benefit the patients outcomes. Ultimately, this particular case study really emphasizes the notion that regardless of the anticipated physical outcome (i.e. remission, increased longevity, or imminent death), physicians must make considerations for their patients regarding both analgesia and contextual health.
One of the most striking negative aspects of this familys experience with the clinical team was the stark professionalism. While it can be difficult for a physician to approach a case without first distancing from it emotionally, the physician must also consider that the patient and family are human: a diagnosis of cancer is unpleasant, scary, and unknown. It is up to the doctor to provide explanation while simultaneously providing comfort and support. The doctors and nurses are the familys contact with the medical whirlwind in which they are the middle; thus,
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the clinicians must use that opportunity to deliver information with a sense of compassion, empathy, and even teamwork. This involves a certain sensitivity to the situation and the family as well as communication skills. A number of the problems encountered during Davids treatment could have been avoided or at least alleviated through good communication on the behalf of the physicians. This includes making eye contact, readily providing relevant information, speaking with the family (rather than at or about them), and actively listening. In addition, the physician should humanize the interaction further by speaking beyond just the medicine: discussing spirituality and other contextual factors can facilitate hope and establish rapport, the importance of which cannot be understated.
Listening and establishing rapport with the patient and te family can allow the physician to connect on a more personal level. Although this can be emotionally difficult for the clinician, given the circumstances, it can be beneficial for all parties, as it creates a sense of familiarity and comfort in the intensely sterile medical environment. As a physician or nurse, it is essential to recognize the emotional burden of caring for a dying patient. That difficulty can be used as a tool, rather than a hindrance. The emotional piece can be used as a connecting point between the physician and the parents: ultimately, parents and physicians often share notions about the quality of the childs care and that needs to be communicated (Ljungman et al. 2006:87). Parents must be considered part of the care team and must be treated as such.
Finally, an attitude that shies away from considering death as a possible (or likely) outcome of cancer can be seriously detrimental to the delivery of the best care possible. Initiating palliative care before the situation is out of hand is not giving up; rather it is considering the comfort, wellbeing, and quality of life of the patient and their family. Planning and goal settingwith the parents involvementis a quintessential piece of this.
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While this particular case study does not delve into the details of pain management over the course of treatment, there are essential landmarks which indicate the general sensitivity of Davids care team. Successful pain management, which equates to a higher quality of life, is dependent on the successful assessment and intervention of that pain while maintaining a sense of the patients context. While we cannot know what assessment tools were used throughout the course of Davids illness, nor can we know what pharmaceutical and alternative interventions were implemented. However, based on the clinical disregard for Davids psychosocial status at certain key points over the course of his illness, it can be safely assumed that there were holes in the pain management of Davids condition. Essentially, very little care was taken by the clinical team to understand and integrate the context of the patient and his life outside and before the hospital into their treatment plan. So, where pain management is concerned, it is possibleeven likelythat David was given enough analgesic medication to ease his nociceptive pain. His perception of his pain and his experience with a painful illness that required painful procedures and interventions was very likely neglected, something that was reflected in his angst and anger near the end of his life before that conversation with his physician.
Like so many pediatric patients facing a cancer diagnosis, David was thrown into a medical setting where he understood little of the situation and was given minimal control and opportunity to be treated as an individual. Moreover, when his prognosis became clear, David and his family were given little consideration, comfort, or direction as they moved toward that point where care became focused on the end of life. Pain management in the pediatric oncology population cannot be observed or analyzed in isolation. While this particular study did not focus solely on pain management, it did illustrate the overall effect of the clinicians actions and attitudes over the entire course of treatment. If nothing else, this case study makes one idea very
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clear: what the clinician does or doesnt do matters to the patient and their family. That notion cannot be taken lightly.
Conclusion
At the end of the day, the best care demands the science of medicine and the art of compassion (Penson et al. 2012:392). A physician in the position of treating the pediatric oncological population, particularly in alleviating chronic pain symptoms, has immense opportunities to improve the quality of a childs life. Through careful and deliberate assessment, management, contextual consideration, and attention to the quality of life, clinicians can achieve a more patient-centered approach to pain symptom management. This approach has the potential to fill in where pure biomedical approaches are falling short and create a better overall experience for the patient.
Based on the bibliographic data compiled and the case study that was examined here, certain improvements can be made. In order to better achieve a comprehensive and effective treatment aiming toward a high quality of life, the physicians and caretakers must be responsible for providing the following aspects of care. First, assessment must be thorough and regular, allowing for the patient to self-report as much as possible. The context of the patient in and out of the setting of care (i.e. the hospital ward) must be considered and factored into every aspect of care. The psychosocial aspects of pain and disease must not be ignored. Cognitive behavioural therapy in addition to awareness of cultural and personal beliefs can be vital. Pain management should be an integrative effort. Patients should have a significant voice in their treatment, from being given explanations to having some control in their treatment course (i.e. deciding when to have blood drawn or choosing which arm will be poked). Individual patients should be individually cared for: there cannot be a standard course of care. Finally, the importance of the
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psychosocial health of the patient and family cannot be overstated. Providing community contributes to this aspect of health.
The vast majority of pain symptom management for this population happens in a hospital setting. However, an emerging field, particularly for palliative care, is managing pain in the home setting (Fortier et al. 2011:249). If this, truly, is the future of pediatric oncology pain care, then the model of care is already shifting to incorporate the childs contexts and the parents as integral members of the care team. More research is indicated here, particularly in the sense of how home care might affect outcomes and pain experiences. Perhaps, for instance, the pain experience is lessened when a child is in a familiar and comforting environment, rather than a hospital setting. This direction looks to be incredibly promising overall.
Ultimately, pediatric oncological chronic pain is an issue that is both widespread and irreverent of the child outside of the disease. Management of that pain does not have to follow the same standard. By incorporating an approach at every level of care that focuses on the patient and the family, rather than number and diagnostic statistics, the inevitable emotional burden felt by patients, families, and clinicians alike can be used for good and alleviated as much as possible.
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Chronic Pain in Pediatric Patients: An Anthropological Approach by Jordan Andersen An undergraduate thesis submitted in partial completion of the M etropolitan State University of D enver Honors Program December 2014 Dr. Rebeca Forgash Dr. Nancy Sayre Dr. Megan Hughes Zarzo Primary Advisor Second Reader Honors Program Director

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Chronic Pain in Pediatric Patients: An Anthropological Approach Jordan E. Andersen Senior Honors Thesis Fall 2014

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2 Table of Contents Abstract ... 3 Introduction .. 3 Defining Pain ... 6 Assessing Pain .. 11 The Context of Pain .. 16 Pain Management .. 21 The Quality of Life ... 25 Case Study 27 C onclusion 36 References .. 3 8

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3 Abstract Chronic pain is an elusive subject in modern biomedicine. However, recent observation and research suggests that chronic pain in pediatric cases is often overlooked and generally underreported. Through a bibliographic study which focused specifically on ch ronic pain in pediatric oncology and i n order to gain an understanding of the complexity of chronic pain in the pediatric subject, I examined the context of the condition, ultimately understanding the spectrum of contexts from the microscopic biological as pects to the macroscopic nature of the culture surrounding the subject. By taking an anthropological approach to a distinctly medical topic, I had the opportunity to analyze the issue through a complex, multidisciplinary lens. Because chronic pain in illne ss is so woven into the context of the patient, the impacts of this condition are far reaching for the patient, family, and team of clinicians. Introduction While pediatric chronic pain is fairly widespread in the United States and Europe with as much as 25 percent of children experiencing chronic pain to some degree (Dobe and Zernikow 2013: 2), it is a largely understudied condition. Moreover, pediatric chronic pain is related closely with the culture and context of the patient. Researchers therefore under stand chronic pain as a culture bound disorder. That is to say, culture has a significant influence on individual experiences of pain and plays a large p art in determining whether that pain will become chronic. In pediatric patients any individual under the age of 18 chronic pain affects the individual and his or her context in a multitude of different ways, including school performance and social development: a child who misses school because of pain not only misses hours of classroom time, but they forfeit valuable time to develop and hone social skills because they are isolated by their symptoms. Similarly, there are a multitude of conditions and diagnoses that are related to

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4 chronic pain in this particular population. For example, pediatric chronic pain is commonly identified in cases of frequent headaches or abdominal pain or more specifically in cases of arthritis or other specific pain syndromes. This study will examine the intricacies of pediatric chronic pain through the narrative of pediatric oncology. Pediatric oncology is a field which increasingly produces successful patient outcomes. Cancer survival rates for children have risen twenty percent since the 1980s (McClain 2011: 226). However, there is still significant room for growth in managing pain in these patients. While researchers and clinicians do not consider chronic pain to be its own diagnostically unique disease or illness in terms of oncology, pain is a large part of a chronic condition and the treatment it entails. Indeed, pain is a central experience for children living (and dying) with a cancer diagnosis. There are many specific challenges that accompany an understanding and management of pediatric pain, for patients, parents, and medical professionals involved in care. An example of this is a pain treatment that interferes with treatment of cancer: some medications that can treat pain also mask signs of infection, like fever. Such challenges that will be discussed include difficulties in assessing pain, understanding the context of the patient, and developing eff ective long term pain management for children. Many of those challenges can and should be met with a medical perspective that surpasses that of typical western biomedicine. Specifically, western biomedicine isolates the diagnosis from the patient, effectiv ely reducing the experience of cancer related pain (in this case) to a simpler model that will be treated pain using a standard progression with little or no personalization. Alternatively, physicians who treat pediatric cancer patients must consider pain family, and perception of their disease as well as the anticipated outcomes.

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5 By approaching chronic pediatric pain through the field of oncology, pediatric chronic pain can be more closely tracked and approached from a multifocal standpoint. As each specialist, physician, nurse, caretaker, and family member sees the patient and differently, each employs a different approach. A view of chronic pain in pediatric oncology that accounts for each of those perspectives has the potential to be much more effective than any single standpoint. More specifically, the perspective of medical anthropology can be employ ed. Medical sociocultural aspects of human behavior, and particularly with the ways in which the two interacted throughout human history to influence health and dis ease ( Helman 2007 :7) Medical anthropology examines a condition on both a population and individual level to determine pathways of study and even treatment using biology and culture in conjunction with one another. This approach is invaluable when confronting a complex condition in a biomedical setting because it provides the necessary biocultural angle. This study argues for a better way to manage pain in pediatric oncology with an understanding of the patient as they relate to their condition. Af ter examining western biomedical approaches to pain, I explore alternative definitions of the causes, treatments, and effects of pain with the ultimate goal of more effective pain management and quality of life. I draw on medical anthropology for its gener al perspective and for a case study approach to applying the principles of the study. Ultimately, I demonstrate the most effective use of the pain assessment and management tools available to physicians. By applying these methods to a real case presented i n the literature, I offer recommendations for physicians and caretakers to best serve their pediatric patients in achieving pain management and a significant quality of life, regardless of the anticipated outcome of the disease.

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6 Defining Pain When definin g pain, there are two general components that must be considered: the qualitative classifications and the physical, chemical processes that are Gatchel et al. Sourkes et al. ) The intricacies of pain dictate that the elements function together and must be examined alongside one another. It can be easy to fall into a trap of focusing only on the physical and chemical elements of pain. Yet, the understanding of pain in a clinical setting must operate within the following set of functional paradigms. First, pain is a process. It evolves, both assessment of pain also mo rph. Second, pain is an experience. Rather than treating pain only as a symptom or a side effect, chronic pain in particular must be considered as an autonomous experience. Indeed, c hronic pain cannot be downplayed as anything less than an experience: its impact o n the patient and on health outcomes is far too great. The third and final paradigm is that pain is both subjective and idiosyncratic. Individual variation in physiology and internal biochemistry play a major role here, but so too do the first two paradigm s. Thus there is no possible standard for morbidity or treatment and, thus, no predictable progression to analyze. In applying these paradigms, defining chronic pain can be done with relative ease, given an understanding of the elements of pain. Historicall y, several theories have been developed to better understand and model pain. Early theories seemed to focus on either nerve stimulation and physical processes or subjective and emotional qualities ( Gatchel et al. 2012 :1 2). In the latter half of the twenti eth century, Gatchel et

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7 al. 2012 :2). During the late 1980s pain researchers devel oped the neuromatrix model which integrates stress along with other factors into a comprehensive theory of pain ( Gatchel et al. 2012 :2). This theory, more than any other before it, recognizes pain as a multifactorial experience, stemming from multiple cau ses and environmental conditions. Today, the standard definition of pain set forth in 1994 by the International Association for the Study of Pain, potential tissue da (Kriszio et al. 2013: 6). Given this definition, i t is prudent to consider the components of pain as equally important in understanding and managing pain for patients. A qualitative understanding of pain is necessary for examining the physiological processes that contribute to a pain experience. Modalities for assessing pain (such as pain scales), which will be examined at length in this paper, are largely quantitative. Nonetheless, efforts to perfect a multifactorial assessment using a quantitative system have been largely unsuccessful thus far. The sensory and emotional components of pain feed off of one another. Each contributes to and perpetuates the other. For examp that will be inflicted by a routine vaccination affects the perception of the actual pain caused by an acute minor trauma: if the child expects immense pain, they will likely experience a more severe pain rea (Kriszio et al. 2013:6). Moreover, pain management should also draw upon a multifactorial approach. Chronic pain is def ined as a pain response that lasts for any extended period of time. The definitions vary wildly here, but can range anywhere from days to months or years. Pertaining to

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8 (Vetter 2012:147). As more time is spent experiencing pain, that pain becomes an increasingly common sense and experience, becomes integrated into an indi Moreover, the chronic pain experience both influences and is influenced by the context of the patient, which will be discussed at length below. However, at this point, it is important to note that chronic pain is especially dependent on the patient, both psychosocially and physiologically. Experiencing pain on a daily basis for a lengthened period of time forges a highly individualized situation that cannot be separated from its context. In short, the significance of a multid imensional approach cannot be understated. With the qualitative, subjective nature of pain in mind, the physiological mechanisms of pain can be considered. In an article in the Journal of Pediatric Oncology Nursing Katherine Patterson identifies one of (Patterson 1992: 121). Kri szio et al define nociception as purely biochemical and biophysical, resul (Kriszio et al. 2013:7). It is certainly of note here that nociception is still not completely understood. Particularly in pain processing, discoveries are still being mad e in terms of biological functions. A basic understanding of nociception is therefore important for a paper of this scope. Nociception can be described in terms of its sub processes, of which there are four: transduction, transmission, modulation, and per ception (Kriszio et al. 2013: 7). Transduction is the transfer of the biochemical response to actual or potential tissue damage (Kriszio et al. 2013: 7). Injury or inflammation triggers a local cellular response which involves the release of substances such as serotonin, ATP, and potassium or hydrogen ions (Kriszio et al. 2013: 7,

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9 molecular mechanisms have been associated with producing the sensation of pain (Al Chaer 2012 : 284), and not all of them are so easily pinned. Perhaps the least understood component of tissue injury into a favored theory (Kriszio et al. 2013: 8). What is known is that on ce transduction occurs, nociception becomes a neurological process, rather than a biochemical one. Transmission is the activation of peripheral nerve fibers which process and transmit the noc iceptive signal to the central nervous system, or CNS ( Kriszio et al. 2013: 8). This is a complex system, both in structure and function. Essentially, peripheral sensory nerves are comprised of myelinated or unmyelinated axons (long projections from the ner ve cell) of the somatic and visceral sensory neurons as well as the various connective sheaths that envelope them (Al Chaer 2012: 273). These nerve fibers are called nociceptors and they are present in high concentrations in almost all tissues (Kriszio et a l. 2013: 8). Nociceptors are highly varied. Some may be activated only by painful stimuli and otherwise lie dormant, while others transmit the quality of pain burning versus prickling, for instance brought about by stimuli (Kriszio et al. 2013: 8 Al Chaer 2012: 274 ) It is perhaps because of this variation that sensitization can occur. Furthermore, nociceptors can become increasingly sensitive to stimuli, exhibiting lower Kriszio et al. 2013: 8 9). In this way, sensitization can play a major role in the transition of pain from acute to chronic. Modulation and perception of pain happen in the central nervous system. Once the injury or tissue damage has been transmitted through nociceptors, the informa tion is modulated in a section of the spinal cord close to the site of injury. Modulation is a complex process whereby

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10 inhibitory interneurons, stimulated by substances like serotonin, inhibit the pain signals before they move farther up the spine or to th e brain (Kriszio et al. 2013: 9 10). This sort o f mediation effectively shields the higher central nervous system (i.e. the brain) from processing every painful stimulus fully. Once this modulation occurs, perception takes projection (Kriszio et al. 2013:10). There are several ascending spinal tracts which aid in the organization, categorization, and ultimate perception of pain. Each spinal tract is a section of the pain pathway and thus has a different functional piece. The paleospinothalamic tract is connected to the limbic system and exhibits slower responses. Researchers believe that this tract is responsible for behavioral changes that lead to avoidance of further injury (Kriszio et al. 201 3: 11). The brain itself is the terminus of the projection pathway for pain. The brain is, ultimately, where culture, experience, subjective perceptions, and psychosocial context becomes vital in the pain experience. There is clearly much variability and in dividuality in the pain experience at all levels with regard to both the quantitative and qualitative aspects. This is the root of the challenge associated with effectively assessing and managing pain, including in situations of pediatric oncology. When ex amining chronic pain in pediatric patients, it is important to realize that while the l differences in the immature and mature pain systems suggest that a number of ke y differences are likely to arise in the inciden ce, pattern, time course, and treatment of chronic pain in (Fitzgerald 2011:19). becomes chronic. One mechanism seems to be insufficiently treated acute pain leading to (Kriszio et al. 2013:20). In a recent study, Erpelding et al.

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11 suggests that the habenula, a small brain structure, likely plays a role in pediatric chronic pain (Erpelding et al. 2013: 239). Chronic pain in pediatrics is an area which is still relatively unexplored and not well understood. Simply put however (Al Chaer 2012:285). In pediatric oncology, pain is certainly a part distribution of pain is more often related to medical procedures than to the pain caused by the disease itself (McClain 2011: 211, Patterson 1992: 119). Approximately 90 percent of all cancer patients experience pai n at some point during the course of the illness (Hjermstad et al. 2012: 71). Indeed, pain is a significant factor in the overall treatment of the patient and his or her disease. Patterson differentiates the types of pain in childhood cancer, organizing the m into four categories: cancer related, treatment related, procedure related, and miscellaneous which includes bedsores and incidental trauma or illness (Patterson 1992: 120). Because pain in this context can be so complex, it is often difficult to systematically manage the pain. The ability to effectively assess is a significant barrier to pain management. Assessing Pain The ultimate motivation for studying pain is, without question, to better equip practitioners to manage that pain for their patients. It has been established that pain is a multifocal experience that is both quantifiably objective and qualitatively subject ive. Logically, (Patterson 1992:119) in order to combat pain in every aspect. Brenda C. McClain, faculty at Yale in the Department for d standardized for consistent (McClain 2011:212). Not only is it important for

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12 the single patient to receive standard care throughout the course of illness, but on a much larger scale, a universally utilized pain assessment system base used with consideration and adjustment for cultural and contextual variation could greatly benefit global pain research as well as the wellbeing of patients world wide. Unfortunately, m edicine has been largely unable to create a single, comprehensive, universal assessment tool. However, there are a multitude of tools that can be properly combined to create the desired effect of successful pain assessment. Even without considering age related development, it can be difficult to determine what kind of scale to use for a patient to measure their pain. Classically as anyone who has ever spent time in a hospital setting in pain will relate a numerical scale is used. This particular ( outside of short term, snapshot situations, like urgent care or emergency rooms ) despite ease of use and familiarity among doctors an d other health professionals (Vetter 2011: 65). One study found that (Arnaout 2010:424). Such defects in pain description directly hinder the success of pain management and therefore must be addressed by physic ians. So what precisely makes for an effective multidimensional scale or matrix of scales? Patterson states that: A comprehensive assessment of childhood pain should include: nature of noxious stimuli; physiological, behavioral, and emotional responses; t report; environmental and situational factors; parental opinions (Patterson 1992: 120).

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13 ivity, interpretability, and feasibility (Vetter 2011: 65). Essentially, then, a comprehensive pain assessment must account for the complexity of the pain itself in addition to the context of both the pain and the patient. Additionally, assessment must pave the way for effective pain management. Those criteria, however, are not the only essential pieces. The fact is that age and developmental factors do matter when choosing an appropriate assessment. Often, particularly with younger children, a burden falls on the parents and nurses in helping the patient self report and communicate their pain ( Wong 1994: 69). As such, assessment tools must not make that burden any more significant observations, or proxy ratin gs (like those from parents), these methods have been shown to decrease in accuracy as pain levels increase (Hjermstad et al. 2012: 76). Thus, when possible, it is of high importance to elicit pain information from the patient. For these reasons, an assessm ent method which allows direct communication between the patient even a very young one and medical professionals is highly beneficial. As previously discussed, the perception of pain is highly individualized and is therefore based on a wide array of conte and cognitive level, previous pain experiences, ability to control the environment, their expectations regarding potential (Vesel et al. 2011196). In ord er for a unidimensional pain scale to be functional in a clinical setting, baselines must be established for each individual patient. Physicians and other providers must understand that the worst pain they can imagine (a 10 on the number scale) cannot be c ompared with the 10 on the scale of a young child. In fact, as disease and treatment progresses, that pain scale has the potential of being dynamic: each new or painful procedure or experience could become the new

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14 worst pain. Pain, as discussed, is a proce ss. Assessment, therefore, must also be a process in order to meet the needs of the patient. self report, health care provider or parent observation, and physiolog ical (Vetter 2011: 64). A combination of these categories should be used to achieve the most accurate measurement of pain, as none are effective alone. While a number scale may be able to pro vide a snapshot so that an appropriate action can be taken (i.e. administering a dose of opioids), clinicians must create a more comprehensive understanding of the pain experience for their patient with a bigger picture in mind. There are two multimodal assessment tools which perform at this level. While they are gener ally used in diagnosing pain disorders (Wager et al. 2013: 43), both tools provide an ideal Adolescents (Wager et al. 2013: 43). Also known as the PQCA, this t ool was originally developed in Germany and is available in an English translation. The components of the PQCA are: sociodemographic data and family history, pain characteristics, pain triggering and pain modulating factors, previous examinations and previ ous therapies, pain related impairment, and cognitive emotional and behavioral effects (Wager et al. 2013: 43). There are different versions of the assessment based on age and cognitive development. Additionally, numerical scales are part of the questionnai re, in order to determine pain related disability and pain perception (the typical 1 to 10 scale). Boris Zernikow, one of the developers of the PQCA, recognizes the extensive nature of the questionnaire and its associated burden on the patient, parents, an d medical staff and recommends the full version be used for the initial assessment with the intention of following up every three months with a shorter version ( Wager et al. 2013:43 )

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15 The other multimodal tool is the pain diary. This tool is incredibly useful for an assessment of the efficacy of pain interventions and the general progression of the pain experience over the course of illness and treatment (Wager et al. 2013: 44). The ideal pain diary includes the main parameters of pain (intensity, frequency, and duration) as well as trigger factors, consequences of pain, pain medication, emotional wellbeing, impairment, attendant symptoms, and applied coping strategies (Wager et al. 2013: 44). Ultimately, this tool puts power into the hands of the patient. This benefits both the ph this (Patterson 1992: 121) By giving some control over to the patient in assessing their pain, the subsequent mana gement and ultimate quality of life are all heightened, a concept which will be explored in depth later. A note here should be made about cross cultural communication as it relates to the assessment of pain. I n his paper on the subject, James Hallenbeck sta voice to such experience ( Hallenbeck 2012: 19) Superficially, this applies to patients who may find difficulty in expressing their pain in when treated sensitively, can be remedied using translation services. However, on a deeper level, there is also a cultural disconnect between the highly technical jargon of the physician and the lay t erms of the patient. This issue must be treated by the physician with a certain degree of finesse and understanding. It is of vital importance that the physician take care to communicate in such a way that is accessible to the patient and family and to tak e measures to fully understand the communications of the patient. For instance, a physician should ask follow up questions

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16 breach in communication, which can be d etrimental to the treatment of the patient, should be reduce any communication difficulties that come up over the course of contact with the patient. The Context of Illness As demonstrated in previous sections, understanding the context of the patient and their illness is the keystone effort that physicians can make toward treating chronic pain in the pediatric oncological population. Certainly, when faced with a diagnosis of cancer and the accompanying symptoms, it can be easy for a physician to treat the medical issues in isolation. This results in a paper patient: a set of diagnoses and symptoms that are clear from the individual nature of the patient. Superfici ally, this might make treatment easier, allowing the physician to create distance from a potentially emotional and complicated situation to reach the treatable issues. However complex the flesh patient, though, the context of the illness and the environmen t of the patient bring a dimension of understanding to the physician in their provision of care. The importance of the context itself cannot be understated at any level of care. the pain experience, a patient history can provide a comprehensive view of both the symptoms and the patient in relation to the environment and context of the illness. In short, without the base of a proper symptom history, the physician cannot hope to bu ild a successfully pain management plan. A good pain and symptom history includes a systematic symptom survey, symptom specific history, oncologic history, general medical history, psychosocial and family history, and a spiritual review (Madden et al. 2005 : 231). B.C. McClain, of Yale University School of

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17 reveal co being and pain experience (McClain 2011: 212) societal nature, a child is not autonomous and is thus embedded in an interactive network that provides support and developmental growth. When a child becomes sick (due to the debilitating pain of a cancer diagnosis, for the purpose of this paper), that network inevitably shifts, becoming smaller in some places while othe r pieces become more important. There is a certain interaction that takes place here: piece s school, friends, family are all heavily impacted by the child in a state of illness. At the same time, those same facets of the As stated in Mi to significant impairments in school functioning (Ryee 2011: 91) Indeed, school attendance and performance prominent. However, the school environment also provid ( Sourkes et al. 2005 : 364) that can be an escape from the environment of hospital treatments, clinicians, and even family. While it can be difficult to sustain formal education through the progression of disease, it is also ve ry important that the care team makes an effort to facilitate a and educators. Ultimately, school itself provides a tangible sense of direction and achievem ent. Hope, which will be discussed in a later section, is correlated with a forward facing approach; that is to say, when a child has something to look forward to or a goal to work toward, that child

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18 is motivated with a future vision. School, therefore, ha s the potential to push a child toward a goal, thereby giving them a sense of success in the future. This is in stark contrast to the clinical medicine that becomes so prominent in the life of a sick child, where they have very little control over the circ umstances or direction of their illness or the associated pain. children to maintain two categories of friends: those from camps for children with similar conditions ( Sourkes et al. 2005 : 370) Children have the ability to empathize with one another: a child facing a cancer diagnos is will often be able to more easily relate with another child who has a similar diagnosis than they would with a typical child. Illness can be incredibly isolating, hindering a child from experiencing their community, particularly on a social level. Maint aining relationships is difficult for both the sick child and their healthy peers, yet it is also incredibly necessary. In pain disorders, research shows that peers encourage pain free behavior, showing less attention to the ailing child during pain episodes (Kriszio et al. 2013: 29). Th e clear correlation here, between patients and their social network, is strongly indicative of the sheer strength of the social context of a patient in its ability to contribute to either a positive or negative outcome in terms of chronic pain. Even by qu antitative measures, the biggest part of the context of a pediatric oncology patient is the family. Particular emphasis is placed on the parents, given their burden in acting as a medical proxy for their child in every stage of illness. Pain associated wit h a chronic condition is a familial stressor. One survey of 533 parents of chronically ill children showed 45 percent of those parents to have lower health related quality of life: these parents found their sleep, social functioning, daily activities, emot

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19 condition (Vetter 2012: 149). While there is no evidentiary support that divorce rates increase due to the impact of childhood cancer (McClain 2011: 227), it is clear that a chronic condition affects the entire family and creates general stress for the entire family unit, however that may be defined by the patient. While a good deal of attention is paid to the parents of a chronically ill patient, the healthy siblings are just as heavily impacted. Bec ause of the excess attention (often unknowingly) paid to the child who is ill, healthy siblings may experience behavioral, psychosocial, and physical problems (McClain 2011: 227). Under the circumstances of chronic illness, clinicians have recently begun ca lling for focus on the siblings in order to mitigate these issues and because pediatric professionals recognize the importance of the sibling to the sick child (Marques da Cunha et al. 2010 Sourkes et al. 2005 : 371). This evidence all ultimately supports a family centered approach to chronic pain in pediatric oncol ogy at every level of care. Psychosocial development is affected when a child faces a chronic illness and the pain associated with it. Gallo and Westhoff recognize the comprehensiveness of the di agnosis and thus call for a comprehensive approach by clinicians, saying: T o offer the sick child and its family biopsychosocial care of optimum quality and to support them as they cope with the disease and the crisis, pediatric oncology must supplement medical treatment and care with a wide range of psychosocial approaches (Di Gallo and Westhoff 2011: 226). While child psychologists in hospitals are a default first line of treatment for the psychosocial aspects of illness, doctors and nurses must also consider the patient beyond the diagnosis and biomedical treatments. Nurses, for instance, have a great deal of contact with the patient and must therefore be willing to bre ach the psychosocial aspects of care for the patient and, often the family. Ultimately, there is no static state of psychosocial health over the course of a chronic

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20 illness: emotions, coping methods, and outlook are all constantly changing for the patient and non fragmented continuous care that covers the biopsychosocial needs of the patient and family. Like some physical after effects of illness, the future psychosocial status of the patient must be considered, particularly if remission or cure seems likely. The Damocles Syndrome is a general term for the long term anxiety and fear that plagues many survivors of childhood cancer (McClain 2011: 226). Essentiall y, there is apprehension that the cancer will come back, and that fear can create problems at school and work, depression, anxiety disorders, unpleasant memories, and a general wariness in creating goals for fear that a cancer relapse will interfere (McCla in 2011: 226, Di Gallo and Westhoff 2011: 236). Counseling during critical parts of the illness itself can mitigate these problems, if clinicians have the foresight to consider long term psychosocial health. Medically, the pain associated with cancer simpl y cannot be treated in isolation. As mentioned previously, one of the sources of pain over the course of illness is that which is associated with treatments or procedures. There is extensive clinical and especially nursing literature regarding the identifi cation, treatment, and prevention of medically caused symptoms which can often cause more pain than the disease itself (McClain 2011: 211), and is therefore of more concern for the care team in alleviating pain in this population. B.C. McClaine states that, in performing painful procedures, health care providers often under utilize pain management methods (McClain 2011: 214). Beyond the pain of hospital procedures, long term therapy related pain can persist long after the cancer itself is gone. One prime exam ple is phantom limb pain due to amputation. This pain syndrome and others like it are neurological in origin and require a different approach than pain specific to the cancer itself (McClain 2011: 216). Chemotherapy

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21 radiation, surgery, and medications can all painful symptoms such as vomiting, sores, and incision or injection site pain (Madden et al. 2005: 232). These bring a challenge in the management of pain and stand to illustrate the complexity of mana ging and understanding the pain experience in the pediatric oncological population. Pain Management There is extensive literature regarding pharmaceutical interventions in pediatric chronic pain due to cancer. There are entire papers devoted to which spec ific drug combinations will best treat certain types of pain in certain types of patients with certain types of cancer. Ultimately, these papers are intended for pharmacists and practicing clinicians and perpetuate the isolationist view of pain symptoms. R ather than rephrase those papers to create a long list of analgesic methods, this section will be used to tease out the more general concepts in managing pain in the pediatric oncological population, including the use of methods other than specific drugs. That being said, there are ways in which the body copes with pain regardless of a have a significant impact on the experience of pain. Given that pain is a subjec tive concept, these cellular level, which is the target of pharmaceutical interventions. Passive coping strategies where the patient perceives that they have n o control over the situation have been shown to be positively correlated with increased pain symptoms, high levels of impairment, and increased long term depressive symptoms (Wager et al. 2013: 39). Problem focused coping, on the other the circumstances and in most cases results in active pain coping behavior (Kriszio et al. 2013: 26) Simple as it may appear, a situation where the patient feels

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22 empowered to be in control gives that patient a sense of autonomy in a setting where there i s relationships, identity, and control ( Sourkes et al. 2005 370). The physician has the obligation to create opportunities for even pediatric pati ents to exert control over their situation. One very simple example is allowing a child to choose which arm in which to receive an injection. Although it is a small gesture, it can provide an essential scenario for a child to take control, thereby reshapin g the entire experience and even the pain associated with it. In the same vein, hope is a concept that has the potential to play a large part in coping with a chronic diagnosis. Certainly, this must be approached with caution: a clinician must balance hope with realistic outlooks. Hope alone can blind a patient or a caretaker to the telling and maintaining hope need not be mutually exclusive (Penson et al. 2012: 390). In fact, when a sense of hope is instilled in the patient alongside treatments and empirical knowledge from clinicians, that sense of hope has been found to be negatively correlated with pain symptoms in cancer patients (Penson et al. 2012: 384). Overall, hope is a coping strategy that is related to the placebo effect, which is, in turn, a valuable asset for clinicians. Placebo, which is well without the substance (Pollo and Benedetti 2012: 331), is any treatment, medication, or practice which triggers (Pollo and Benedetti 2012: 332). Put simply, that delivered context is an important piece of any symptom management methods. Pharmaceutical methods are the staples of the wester n biomedical physician in treating pain symptoms, regardless of the causative agent. Because it staunchly believes pain management to be a universal human right, the World Health Organization (WHO) has a set of

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23 published guidelines for pain management whic h many physicians use globally. This analgesic ladder, developed in 1998, outlines a four step progression from non opioid analgesics through weak and strong opioids and then on to invasive therapy ( Vesel et al. 2011 : 197). Although pain symptom management must ultimately be a process tailored to the individual patient, the WHO analgesic ladder is certainly a good place to start. In one study, pain was the presenting symptom in 62 percent of children with new cancer diagnoses ( Vesel et al. 2011 : 194), indicat ing that pain management for this population may have to start on a higher rung of the WHO ladder in order to provide adequate relief. A German pain management survey which examined the effectiveness of the WHO ladder in pediatric oncological pain found th at step 3 (strong opioids) was the most commonly used and the escalation from step 2 (weak opioids) to step 3 was the most common treatment shift within a single pain cycle (Zernikow et al. 2006: 589). This study supports a pain management regiment which ai ms to provide as much relief as possible, where side effects of the pain therapy come second to analgesia. The treatment of pain in this context differs from that in a context of other categories of chronic pain in adults and children. H.S. Smith et al. re commend the use of nonopioid analgesics as a first nociceptive pain (Smith et al. 2012: 472). As discussed earlier, a significant portion of the pain experienced by pediatric patients with cancer is related to the treatment they receive and the adequate enough to combat that pain and aid in the heal ing process. In clinical practice, there are significant barriers to a dequate pain symptom treatment and a number of those hindrances stem from misunderstandings about medications and treatments on the part of the clinicians and the family. Most notably, there can be fear and reluctance in prescribing any opioid to a pediatr ic patient in a certain cautiousness regarding the side effects of

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24 potent opioid medications such as overdose, respiratory depression, addiction, and substance dependence ( Vesel et al. 2011 : 196). These fears are largely unfounded and based on a lack of edu cation. Patterson states the undertreatment of pain in children to be attributed to five systems are too immature to experience pain, children metabolize opioi ds differently, children have no memory of pain, and children become easily addicted to narcotics (Patterson 1992: 122). Patterson also simplifies the difficulties on the part of the clinician, saying that physicians and nurses tend to have preconceived no tions about how much pain each procedure should produce without regard to the subjective nature of pain and if clinicians were to dispose (Patterson 1992: 12 1) Thus, effective pain management is linked not only to an adequate pain. Certainly, choosing a pharmaceutical treatment is based both on guidelines like tho se effects) which accompany each option and it is up to the physician as well as any suppo r t staff (such as those in the pharmacy) to determine the best course for the patient. Typically, the nonopioid analgesic options include nonsteroidal anti inflammatory drugs such as Ibuprofen, salicylates like Aspirin, and acetaminophen which is commonly known as Tylenol ( Lee 2011: 319). If feasibly effective, these analgesics can be used alone, but they can also be used in conjunction with opioids. There is another class of nonopioids which are specifically used as adjuvant therapies to increase the efficacy or negate the side effects of opioid or nonopioid treatments ( Lee 2011 : 326). Strong and weak opioids are typically used in the WHO ladder steps

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25 two and three. The most important feature of pharmaceutical pain intervention is around the clock administration, rather than giving medications as needed (McClain 2011: 222). This cr eates a situation where breakthrough pain (sudden, severe flares) are less common and pain management is generally more effective with less stress for the patient. Along these guidelines, side effects of the opioids such as sedation and constipation are to be expected but can be managed quite easily. Aside from pharmaceutical interventions and aforementioned psychological treatment, complementary and alternative medicine (CAM) can be used in addition to typical biomedical practices in what is known as integ rative therapy. With the prevalence of pediatric CAM use ranging from six to 91 percent in 2010 ( Punja et al. 2012: 187), its use has been gaining particular evi dence based, complementary therapies and mainstream care to deliver a multidisciplinary approach to evaluate and treat the whole person (Chokshi and Kelly 2012: 152) Ultimately, the goal is to fill the gap in treatment where biomedical therapies fail, nam ely in alleviating centered care (Meyer n.d.: 96) This focus allows the family to exert some control over the treatment regarding the whole patient: context and symptoms, creati ng an ideal model of care. The Quality of Life Arguably, the pinnacle responsibility of a clinicia n who is treating pain in the pediatric oncology patient is to reach and maintain a certain quality of life for the patient. Certainly, assessment, contextual understanding, and pain management are all landmarks in this process; however, those efforts are for naught if the patient or family feels that the quality of life has been sacrificed for any reason. At all stages through the progression of illness, the physician must not

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26 only assess the efficacy of treatments and symptom management, but also the heal th related quality of life (HRQoL). Self report of this assessment is important because it depends on the pat i (Vetter 2012: 152). An assessment of the HRQoL can p rovide insight for the physician so that decisions can be made regarding the quality of care and the methodology of the medicine being delivered. Oncology is largely regarded as a medical field that focuses on helping patients achieve remission and increa sed longevity. However, this outcome is not always possible. Though the number is decreasing as medical technology improves, cancer still kills children: cancer was responsible for four percent of childhood deaths in 1999, following unintentional injuries (22%), homicide and suicide (8%), congenital anomalies (12%), SIDS (5%) and other causes ( Sourkes et al. 2005 : 352). Yet, because of the nature of cancer in its time and increasing medical dependence over the course of disease, cancer patients make up a lar ge f r action of pediatric patients who receive palliative care. Pediatric palliative care in oncology aims consistent care to children living with cancer and their family members (Foster et al. 2010: 206). A more gen eral definition of the field of pediatric palliative care is: Palliative care for children and young people with life limiting conditions is an active and total approach to care, embracing physical, emotional, social, and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distress ing symptoms, provision for respite, and care through death and bereavement ( Sourkes et al. 2005 : 351).

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27 ( Sourkes et al. 2005 373) Clearly, this is a very important mode of care, particularly when the outcome of the illness becomes bleak with a terminal diagnosis. However, it is estima ted that less than one percent of approximately five thousand children who die each year receive any type of palliative care services. Palliative care in pediatrics is growing, but it is still a very small field in medicine. This is likely not out of a sen se that palliative care is not necessary for this population, but rather that there is a general feeling among many clinicians (and parents) that to transition to palliative care is to give up ( Vesel et al. 2011 : 196). The mode of care in hospice situations varies greatly from that of a curative origin and physicians and nurses often feel unprepared for the new challenge which accompanies palliative care ( Stayer 2012: 350). That said, pediatric palliative care is a culmination of the care brought forth thro ugh out treatment: clinicians must still assess and treat symptoms (pain) and the context of the patient, bereavement and psychological status. While children are missing normal development milestones by being isolated in the confront life issues prematurely, and conceptualize things that would ordinarily lie beyond their grasp ( Sourkes et al. 2005 : 360). Because of this uniquely challenging situation, clinicians must consider the way they han dle themselves and deliver to the patient the best, most compassionate pediatric palliative care. Case Study The following is a case study is taken directly fr

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28 son, who was diagnosed with acute lymphoblastic leukemia in 1995 when he was 11 years old. David was playing with his younger sister, Sarah, in our kitchen before dinner. Suddenly and with no apparent cause, he fell down. I went to check on him and asked what happened; he said that his le hours he began limping and complained that his hip was very sore. By the end of 11 and had had a complete physical examination a week bef ore. Everything had he was crying out in pain. Benign conditions were ruled out one by one. The pediatrician ordered a computed tomography scan. Six weeks after the onset of t he performed a bone marrow biopsy. The biopsy indicated that David had acute lymphoblastic leukemia. The David achieved remission within 3 weeks and, by mid January, he returned to school. For the next 2 years he endured an intensive chemotherapeutic regimen. Three years after the initial diagnosis, things had more or less returned to graduation from eighth grade. During the summer with the approval and encouragement of his pediatric oncologist David, then 15, went to sleep away camp for a month. This was his first time away from home since his diagnosis, and

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29 he was nervous. So were his father and I. When he came home, we noticed that he was limping and supporting his hips with his hands. I took office the next day. His blood work was normal, but his mobility began to deteriorate. He could barely tolerate his first day as a freshman in high school. Within 2 hours the school nurse called, and when I arrived to pick him up, I noticed that David was pale and short of breath. I immediately brought him to the oncologist, where another bone marrow biopsy revealed that the disease had returned. The medical team that had treated David initially determined that his body was too weak to endure long term chemotherapy. The pediatric oncologist state to discuss a bone marrow transplant and a new treatment plan. We followed this advice immediately. Joe and I took David to a consultation with the esteemed head of the bone marrow transplant team. Of course, we had high expectations and were eager to hear new recommendations. The meeting did not go as we hoped it would. As soon as formal introductions were exchanged, the surgeon plunged into a discussion of the complications and mortality rates associated with the risky bone marrow transplant. I turned toward David, who had covered his ears with his hands; he was looking down and shaking his head in disbelief. Joe and I were aghast. How could such a highly skilled physician be so insensitive to the power of her words and the effect they might have on our young son?

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30 We asked David whether he wanted to leave the room. He did. At the close of the meeting, Joe and I were b ewildered. If the head of the transplant team could be so unaware of the effect of her words, then what could we expect from the rest that institution. During the entire c were always aware that he could lose his life. At the age of 11 and with no illness; in fact, he was relieved when h e learned his diagnosis. Finally, there was a understanding was significantly more advanced. By this time he had learned about all the medications and their side effects. Devas tated that he was going to have to David endured more chemotherapy to achieve remission, and then underwent a stem cell transplant. For a month afterward he remained in strict isolation. Soon our usually even tempered and amiable son was becoming depressed, easily agitated, and uncharacteristically confrontational. The members of the interdisciplinary team, which included oncologists, nurses, and a child age who had been placed in isolation, but it was obvious by the second week that there was something more going on. His father and I again s ought professional guidance.

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31 The child psychiatrist spoke to him but was unable to coax him into sharing he refused. Meanwhile, Joe and I and the rest of the team members were becoming more son, his body language telegraphed his discomfort. It was a n uncomfortable moment for us, too. We felt that David needed professional help in dealing with his this highly skilled expert one who could navigate through all of the medical complexities of treating cancer psychological struggle. With a sense of desperation, we pleaded with the physician until he re lented. room and told us that our son had many questions about death and his own discussion was much find him smiling and calm, in a peaceful state of mind. He was ready to play a game! In the first 6 months after the t ransplant, David did well. In the seventh month, he developed graft versus host disease and was treated conservatively at

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32 home. Six weeks later, his treatment was intensified with intravenous prednisone, which further suppressed his immune system and left him vulnerable to infection. Soon after this treatment began, David experienced worsening symptoms and needed to be hospitalized. As long as we were with him, David remained calm and good humored while coping with the treatments. Our fear was under control In the last 2 weeks of his life, David suffered seizures and severe respiratory distress. The health care team members suspected that David had contracted an aspergillus infection due to his immunocompromised state (a suspicion that was later confirmed b declined and he required intubation to maintain a normal level, but even that David was heavily sedated. It was during this time that David was transferred into the pediatric intensive care unit and his condition deteriorated quickly. There was knew how serious the situation was. T ense and distant, they always hurried in and David was going to die, and this terrified us. I se nsed that this was the beginning of the end. did survive, what kind of quality of life we could expect. The physician reluctantly admitted that if he survived, he would need several organ transplants and would be ridden with catastrophic health issues throughout the remainder of his life. Until

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33 then, none of the clinicians had initiated a conversation about the possibility of David not surviving, nor had anyone raised the question of his probable quality of life if he did surv ive. Once Joe and I understood the likely outcomes, we were able to come to a decision: we decided not to escalate care. The primary focus of care was to be supportive, with an emphasis on comfort and pain management. We also decided to forego cardiopulmon ary resuscitation. to get slower and slower until it finally stopped. Joe and I were at his bedside ( ). This study illustrates several major pieces of the pediatric oncological process from the unique perspective of a parent who is also a clinician. From initial diagnosis to in hospital treatment to the eventual decision to focus solely on palliative care and end of life considerations, there were several ar emphasizes the notion that regardless of the anticipated physical outcome (i.e. remission, increased longevity, or imminent death), physicians must make considerations for their patients regarding both analgesia and contextual health. team was the stark professionalis m. While it can be difficult for a physician to approach a case without first distancing from it emotionally, the physician must also consider that the patient and family are human: a diagnosis of cancer is unpleasant, scary, and unknown. It is up to the d octor to provide explanation while simultaneously providing comfort and support. The doctors and

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34 the clinicians must use that opportunity to deliver information with a sense of compassion, empathy, and even teamwork. This involves a certain sensitivity to the situation and the family treatment could have been avoided or at least a lleviated through good communication on the behalf of the physicians. This includes making eye contact, readily providing relevant information, speaking with the family (rather than at or about them), and actively listening. In addition, the physician shou ld humanize the interaction further by speaking beyond just the medicine: discussing spirituality and other contextual factors can facilitate hope and establish rapport, the importance of which cannot be understated. Listening and establishing rapport with the patient and te family can allow the physician to connect on a more personal level. Although this can be emotionally difficult for the clinician, given the circumstances, it can be beneficial for all parties, as it creates a sense of familiarity and co mfort in the intensely sterile medical environment. As a physician or nurse, it is essential to recognize the emotional burden of caring for a dying patient. That difficulty can be used as a tool, rather than a hindrance. The emotional piece can be used as a connecting point between the physician and the parents: ultimately, parents and physicians often share notions about the (Ljungman et al. 2006: 87). Parents must be considered part of the care team and must be treated as such. Finally, an attitude that shies away from considering death as a possible (or likely) outcome of cancer can be seriously detrimental to the delivery of the best care possible. Initiating palliative care before the situati on is out of hand is not giving up; rather it is considering the comfort, wellbeing, and quality of life of the patient and their family. Planning and goal setting is a quintessential piece of this.

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35 While this particular case study does not delve into the details of pain management over the course of treatment, there are esse ntial landmarks which indicate the general sensitivity of David s care team. Successful pain management, which equates to a higher quality of life, is dependent on the successful assessment an d intervention of that pain while maintaining a sense of the patient s context. While we cannot know what assessment tools were used throughout the course o f David s illness, nor can we know what pha rmaceutical and alternative interventions were implemented. However, based on the clinical disregard for David s psychosocial status at certain key points over the course of his illness, it can be safely assumed that there were holes in the pain managem ent of David s condition. Essentially, very little care was taken by the clinical team t o understand and integrate the context of the patient and his life outside and befo re the hospital into their tre atment plan. So, where pain management is concerned, it is possib le even likely that David was given enough analgesic medication to eas e his nociceptive pain His percept ion of his pain and his exper ience with a painful illness that required painful pro cedures and interventions was very likely neglected, something that was reflected in his angst and anger near the end of his life before that conversation with his physic ian. Like so many pediatric patients facing a cancer diagnosis, David was thrown into a medical setting where he understood little of the situation and was given minimal control and opportunity to be treated as an individu al. Moreover, when his prognos is became clear, David and his family were given little consideration comfort or direction as they moved toward that point where care became focused on the end of life. Pain management in the pediatric oncology population cannot be observed or analyzed in isolation W hile this particular study did not focus solely on pain management it did illustrate th e overall effect of the clinicians actions and attitud es over the entire course of treatment. If nothing else this case study makes one idea very

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36 clear: what the clinician does or doesn t do matters to the patient and their family. That notion cannot be taken lightly. Conclusion At the end of th compassion (Penson et al. 2012: 392). A physician in the position of treating the pediatric oncological population, particularly in alleviating chronic pain symptoms, has immense opportun management, contextual consideration, and attention to the quality of life, clinicians can achieve a more patient centered approach to pain symptom management. This approach has the potential to fill in where pure biomedical approaches are falling short and create a better overall experience for the patient. Based on the bibliographic data compiled and the case study that wa s examined here, certain improvements can be made. In order to better achieve a comprehensive and effective treatment aiming toward a high quality of life, the physicians and caretakers must be responsible for providing the following aspects of care. First, assessment must be thorough and regular, a llowing for the patient to self report as much as possible. The context of the patient in and out of the setting of care (i.e. the hospital ward) must be considered and factored into every aspect of care. The psychosocial aspects of pain and disease must n ot be ignored. Cognitive behavioural therapy in addition to awareness of cultural and personal beliefs can be vital. Pain management should be an integrative effort. Patients should have a significant voice in their treatment, from being given explanations to having some control in their treatment course (i.e. deciding when to have blood drawn or choosing which arm will be poked). Individual patients should be individually cared for: there cannot be a standard course of care. Finally, the importance of the

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37 psychosocial health of the patient and family cannot be overstated. Providing community contributes to this aspect of health. The vast majority of pain symptom management for this population happens in a hospital setting. However, an emerging field, partic ularly for palliative care, is managing pain in the home setting (Fortier et al. 2011: 249). If this, truly, is the future of pediatric oncology pain care, int egral members of the care team. More research is indicated here, particularly in the sense of how home care might affect outcomes and pain experiences. Perhaps, for instance, the pain experience is lessened when a child is in a familiar and comforting environment, rather t han a hospital setting. This direction looks to b e incredibly promising overall. U ltimately, pediatric oncological chronic pain is an issue that is both widespread and irreverent of the child outside of the disease. Man agement of that pain does not have to follow the same standard. By incorporating an approach at every level of care that focuses on the patient and the family, rather than number and diagnostic statistics, the inevitable emotional burden felt by patients, families, and clinicians alike can be used for good and alleviated as much as possible.

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38 R eferences Hallenbeck, James 2012 Neuroanatomy of Pain and Pain Pathways. In Handbook of Pain and Palliative Care: Biobehavioral Approaches for the Life Course. Rhonda J. Moore, ed. Pp. 273 294. New York: Springer. Arnaout, Maha, Dima Ezmigna, Laila Khoulli, and Rasha Deebajah 2010 Nursing Documentation of Pain Assessment in a Pediatric Oncology Unit. Journal of Pa in and Symptom Management 39(2):424 425. Chokshi, Sagar and Kara Kelly 2012 Potential Role of Complementary and Alternative Medicine in Pediatric Oncology: The Future of CAM Research In Integrative Pediatric Oncology Alfred Lngler Patrick J. Mansky and Georg Seifert eds. Pp. 147 156. Berlin: Springer Verlag. Di Gallo, Alain and Kerstin Westhoff 2011 Psychology and Psychosocial Issues in Children with Cancer. In Pediatric Oncology. P. Imbach, ed. Pp. 225 239. Berlin: Springer Verlag. Dobe, Michael and Boris Zernikow 2013 Epidemiology of Chronic Pain in Children and Adolescents. In Practical Treatment Options for Chronic Pain in Children and Adolescents. Michael D obe and Boris Zernikow, eds. Pp. 1 3. Berlin: Springer Verlag. Erpelding, Nathalie, Simona Sava, Laura E. Simons, Alyssa Lebel, Paul Serrano, Lino Becerra, and David Borsook 2013 Habenula Functional Resting State Connectivity in Pediatric CRPS. Journal of Neurophysiology 2013(111):239 247. Fitzgerald, Maria 2011 The Neurobiology of Chronic Pain in Children. In Handbook of Pediatric Chronic Pain: Current Science and Integrative Practice. Brenda C. McClain and S. Suresh, eds. Pp. 15 25. New York: Springe r. Fortier, Michelle A., Leonard S. Ender, and Zeev N. Kain 2011 Management of Pediatric Oncology Pain in the Home Setting: The Next Frontier. Journal of Pediatric Hematology Oncology 33(4):249 250. Foster, Terrah L., Deborah A. Lafond, Cheryl Reggio, an d Pamela S. Hinds 2010 Pediatric Palliative Care in Childhood Cancer Nursing: From Diagnosis to Cure or End of Life. Seminars in Oncology Nursing 26(4):205 221. Gatchel, Robert J., Robbie Haggard, Christina Thomas, and Krista J. Howard 2012 Biophysical Approaches to Understanding Chronic Pain and Disability. In Handbook of Pain and Palliative Care: Biobehavioral Approaches for the Life Course. Rhonda J. Moore, ed. Pp. 1 16. New York: Springer. Hallenbeck, James 2012 Pain and Intercu ltural Communication. In Handbook of Pain and Palliative Care: Biobehavioral Approaches for the Life Course. Rhonda J. Moore, ed. Pp. 19 34. New York: Springer. Helman, Cecil G.

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39 2007[1984] Culture, Health and Illness. London: Hodder Arnold. Hjermstad, Marianne Jenson, Dagny Faxvaag Haugen, Michael I. Bennett, and Stein Kaasa 2012 Pain Assessment Tools in Palliative Cancer Care. In Handbook of Pain and Palliative Care: Biobehavioral Approaches for the Life Course. Rhonda J. Moore, ed. Pp. 71 94. New Y ork: Springer. Kriszio, Holger, Julia Wagner, Michael Dobe, Tanja Kechler, and Boris Zernikow 2013 Pain Disorder: A Biopsychosocial Disease. In Practical Treatment Options for Chronic Pain in Children and Adolescents. Michael Dobe and Boris Zernikow, ed s. Pp. 5 32. Berlin: Springer Verlag. Lee, Benjamin Howard 2011 Pharmacology of Chronic Pain Management. In Handbook of Pediatric Chronic Pain: Current Science and Integrative Practice. Brenda C. McClain and S. Suresh, eds. Pp. 315 342. New York: Spring er. Ljungman, Gustaf, Anders Kreuger, Torsten Gordh, and Stefan Sorensen 2006 Pain in Pediatric Oncology: Do the Experiences of Children and Parents Differ from Those of Nurses and Physicians?. Upsala Journal of Medical Science 111(1):87 96. Madden, Rene e M., Susannah E. Koontz Webb, Donna S. Zhukovsky, and Craig A. Mullen 2005 Supportive Care: Symptom Control. In Pediatric Oncology. Ka Wah Chan and R. Beverly Raney, eds. Pp. 218 243. Boston, MA: Springer Verlag. Marques da Cunha, Beatriz, Cecilia Maria Lima de Costa, and Andrea Y. Kurashima 2010 Quality of Life of Children 7 12 Years and Their Siblings. European Journal of Oncology Nursing 14(2010):81. McClain, Brenda C. 2011 Cancer Related Pain in Childhood. In Handbook of Pediatric Chronic Pain: C urrent Science and Integrative Practice. Brenda C. McClain and S. Suresh, eds. Pp. 211 233. New York: Springer. Meyer, Mark J. n.d. Integration of Pain Services into Pediatric Oncology. International Anesthesiology Clinics 175:95 107. and Robin Bennett Kanarek 2013 Understanding Pediatric Palliative Care: What it Is and What it Should Be. Journal of Pediatric Oncology Nursing 2013(30):34 44. Patterson, Katherine L. 1992 Pain in the Pediatric Oncology Patient. Journal of Pediatric Onc ology Nursing 1992(9):119 130. Penson, Richard T., Lynette Su Mien Ngo, and Giallianne Lai 2012 Hope in the Context of Pain and Palliative Care. In Handbook of Pain and Palliative Care: Biobehavioral Approaches for the Life Course. Rhonda J. Moore, ed. Pp. 383 398. New York: Springer. Gatchel, Robert J., Robbie Haggard, Christina Thomas, and Krista J. Howard 2012 Biophysical Approaches to Understanding Chronic Pain and Disability. In Handbook of Pain and Palliative Care: Biobehavioral Approaches for the Life Course. Rhonda J. Moore, ed. Pp. 1 16. New York: Springer.

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40 Pollo, Antonella and Fabrizio Benedetti 2012 Pain and the Placebo/Nocebo Effect. In Handbook of Pain and Palliati ve Care: Biobehavioral Approaches for the Life Course. Rhonda J. Moore, ed. Pp. 331 346. New York: Springer. Ryee, Mi Young 2011 Psychiatric Considerations in Pediatric Chronic Pain. In Handbook of Pediatric Chronic Pain: Current Science and Integrati ve Practice. Brenda C. McClain and S. Suresh, eds. Pp. 87 94. New York: Springer. Smith, Howard S., Sukdeb Datta, and Laxmaiah Manchikanti 2012 Evidence Based Pharmacotherapy of Chronic Pain. In Handbook of Pain and Palliative Care: Biobehavioral Approa ches for the Life Course. Rhonda J. Moore, ed. Pp. 471 495. New York: Springer. Sourkes, Barbara, Larry Frankel, Michelle Brown, Nancy Contro, William Benitz, Colette Case, Julie Good, Laurie Jones, Jack Komejan, Judy Modderman Marshall, Wilma Reichard, S andra Sentivany Collins, and Cameron Sunde 2005 Food, Toys, and Love: Pediatric Palliative Care. Current Problems in Pediatric Adolescent Health Care 2005(35):350 386. Stayer, Debbie 2012 Pediatric Palliative Care: A Conceptual Analysis for Pediatric Nursing Practice. Journal of Pediatric Nursing 2012(27):350 356. 2011 Pain Management in Pediatric Palliative Care. In Handbook of Pediatric Chronic Pain: Current Science and Integrative Practice Brenda C. McClain and S. Suresh, eds. Pp. 193 210. New York: Springer. Vetter, Thomas R. 2011 Assessment Tools in Pediatric Chronic Pain: Reliability and Validity. In Handbook of Pediatric Chronic Pain: Current Science and Integrative Practice. Brenda C. McClain and S. Suresh, eds. Pp. 63 85. New York: Springer. Vetter, Thomas R. 2012 Pediatric Chronic Pain. In Handbook of Pain and Palliative Care: Biobehavioral Approaches for the Life Course. Rhonda J. Moore, ed. Pp. 147 New York: Springer. Wager, Julia, Holger Kriszio, Micahel Dobe, Tanja Hechler, and Boris Zernikow 2013 Diagnostics of Chronic Pain in Children and Adolescents. In Practical Treatment Options for Chronic Pain in Children and Adolescents. Michael Dobe and Boris Zernikow, eds. Pp. 33 47. Berlin: Springer Verlag. Wong, Donna L. 1994 Measuring Pain in Pediatric Oncology ICU Patients. Journal of Pediatric Oncology Nursing 11(2):69 70. Zernikow, Boris, Helen Smale, Erik Michel, Carola Hasan, Norbert Jorch, and Werner Andler 2005 Paed iatric Cancer Pain Management Using the WHO Analgesic Ladder Results of a Prospective Analysis from 2265 Treatment Days During a Quality Improvement Study. European Journal of Pain 10(2006):587 595.