Caring for children with chronic pain: ethical considerations

Clinical decisions about whether children were experiencing pain and, if so, about the particular pain therapies required, were long based primarily on physicians’ personal beliefs rather than on scientific evidence. Regrettably, common misbeliefs – that children did not feel pain as intensely as adults and consequently did not require similar analgesics and pervasive fears – that children were at heightened risk for opioid addiction and should receive minimal analgesic doses, caused many children to suffer needlessly (1,2). Unprecedented scientific and clinical attention subsequently focused on the unique pain problems of infants, children and adolescents – revealing the adverse impact of untreated postoperative pain and inadequately treated procedural pain for children with cancer. The ensuing publicity as people learned that minimal anesthesia and analgesia represented ‘the norm in pediatric postoperative management’, rather than the exception, sparked a revolution (2). Clinical practice started to change so that children began to receive more appropriate analgesics at adequate doses and regular dosing intervals. Treatment emphasis also shifted gradually from an almost exclusive disease-centered focus – detecting and treating the putative source of tissue damage – to a more child-centered perspective – assessing the child to identify any environmental and psychological factors that contributed to pain, so as to target interventions accordingly. Today, increasing attention is focused on the rights of all children to receive adequate pain control (3–7). Yet, despite our continuing efforts to make ‘children’s pain control’ a higher priority throughout the world, serious challenges remain. In particular, the management of childhood chronic pain is a continuing problem in many centers, creating ethical dilemmas from patient-centered, health care and societal perspectives. Like adults, children can experience many types of chronic pain – caused by disease, injury, psychological factors and for apparently inexplicable reasons. Yet, although chronic pain is recognized as a major health problem for adults and a major economic problem in many countries, relatively little societal attention has focused on childhood chronic pain. Consequently, adults typically benefit from an earlier diagnosis, more accessible intervention and more evidence-based treatment options in comparison with children. Societal recognition of the impact and cost of chronic pain has led to increased funding for research on causes, risk factors and effective treatments so that adults with chronic pain benefit from a substantial knowledge base supported by Industry and granting agencies. In marked contrast, children with chronic pain are ‘orphans’ from several perspectives. We lack definitive epidemiological data needed to document the real costs of childhood chronic pain (personal and economic) and ensure appropriate health funding. Recent surveys indicate that a significant proportion of children experience impaired quality of life because of pain (8–10) but definitive data on the prevalence and impact of chronic pain are lacking (11). Longitudinal studies are required to document the natural history of the varied pain conditions, determine prognostic factors and identify any high risk groups that should receive special intervention to reduce the likelihood that their disabling pain will continue into adult life. Sensitive and child-based (i.e., developmentally appropriate) diagnostic criteria are needed to diagnose and treat children in a timely manner. Since specific pain features and sensory deficits have not been well detailed for most childhood chronic pain conditions, clinical diagnostic criteria are based on disease characteristics that have been described for adults, even though clinical and community studies indicate that the presentation of pain is often different in children. Descriptive clinical studies are needed to establish developmentally appropriate pain classifications and diagnostic criteria. We lack child-specific data about the efficacy of the key drug and nondrug therapies used for chronic pain management. In marked contrast with the regulatory-required data obtained in Randomized Clinical Trials (RCTs) to document treatment efficacy for adults with chronic pain, most regulatory agencies have neglected the need for obtaining comparable efficacy data for children until relatively recently. As a result, the efficacy of almost all drug therapies used to treat children’s chronic pain is based on extrapolation from adult data. As an example, tricyclic antidepressants and gabapentin are well-established analgesics for neuropathic pain in adults, but evidence for their efficacy in children is confined to case reports or very small series (12). Similarly, the data supporting the efficacy of cognitive-behavioural therapies for childhood chronic pain is derived primarily from studies of childhood headache (13). As Eccleston et al. (14) stated, we urgently need well-designed studies of nonheadache chronic pain in children and adolescents. We lack interdisciplinary pain clinics and programs for children, especially the intensive rehabilitation programs, that are needed to treat children and adolescents with chronic pain and long-standing disability. These children often require intensive psychiatric or psychological therapy, in addition to medical intervention, physical therapy, academic assistance and family education. While adult rehabilitative programs are more widely available, it is often a challenge to provide similar physical resources for children with sufficient staffing by health care providers who are specifically experienced in the needs of children with chronic pain (15). Children are not simply ‘little adults’ with respect to chronic pain – from both biologic and psychologic perspectives. Their developing nociceptive system responds differently to injury (i.e., increased excitability and sensitization) in comparison to the mature adult system (16,17) and, even more than in adults, children’s pain can be modified by psychological factors such as their beliefs, expectations, perceived control and the significance that they attach to the pain (18). Children with chronic pain depend greatly on their parents (and adult health care providers) to understand their pain condition – especially pains not directly related to disease, to learn how to cope, and interpret its impact on their lives. Parents usually decide (for children) or influence (for adolescents) treatment choices and control access to treatment. Consequently, children are more susceptible than adults to the influence of these situational factors and more at risk for increased pain and disability. Our ethical guiding principles for caring children with chronic pain are to deliver optimal care while adhering to the values of patient autonomy and beneficence, and guarding against harm (5). Pain management begins with an assessment of the child with pain – not only the explicit pain features but also the situational factors that modulate pain. Parents typically need to learn that chronic pain, especially complex chronic pain conditions without underlying injury, is different than acute injury related pain. Education should be provided about the contribution of multiple etiologic factors, the biopsychosocial perspective, and rationale for a multimodal treatment approach. Otherwise, parents may subject children to additional and unnecessary diagnostic tests in search of some underlying physical abnormality. The diagnosis should include the primary cause(s) for pain and any psychosocial factors that are increasing pain or prolonging children’s disability. Treatments should be targeted at each relevant factor, with regimens often comprised of ‘the 3 P’s’– pharmacological, psychological and physical therapy. If parents do not understand the rationale for these varied components, they may fail to follow the treatment recommendations and deprive children of potentially effective therapy. Health care providers fail children and their families when they do not clearly communicate a diagnosis and provide an understandable rationale for the recommended treatments. Regrettably, ethical challenges arise when parents refuse treatments that best support the welfare of their child. When such situations occur, health care providers should assess parent decision-making capacity, refute any erroneous beliefs and alleviate any ungrounded fears. In most cases, health care providers must accept parents’ decisions. However, when parents’ actions mean children will likely suffer harm as a result (19), health care providers could seek assistance from an institutional ethical committee or ethical consultant. As a final measure, when decisions represent harm to the child or neglect, legal protection services should be involved and decision making responsibilities may be shifted to a guardian (19,20). Children should be involved in their health care decisions to the greatest extent possible (19,21). The dictates of informed consent require that: (1) health care providers use language that is appropriate for a child’s developmental age to explain their condition, the proposed treatment and associated risks/benefits, and the risks/benefits of alternative treatments (including the choice of no treatment); (2) that children (or parents as surrogate decision makers) have appropriate decision making capacity, including the ability to understand and communicate relevant health-related information, comprehend the consequences of the proposed treatment, nontreatment, and treatment alternatives; and (3) that children have autonomy, so to the greatest extent possible, they are free to choose treatment without being coerced or manipulated (21). Overprotective attitudes of health care providers and underestimation of children’s decision making capacity contribute to our tendency to overlook the rights of children to express their views (22). Yet, children are considered capable of decision-making if they possess the cognitive and emotional processes necessary relative to the health care decision at hand (23). Therefore, the greater the risk of possible harm (e.g., discontinuing a life saving treatment), the greater the competency required. If children refuse treatment, health care providers should assess their decision-making capacity, explain the potential benefits and risks of available treatments in age-appropriate language, clarify any misunderstandings and only force treatment as a last option. In summary, similar to adults, children have the right to receive optimal, ethically sound pain management. Yet, disparities between children and adults in our knowledge base, resource availability, knowledge transfer from research to clinical practice and access to care can compromise our ability to deliver optimal care to children with chronic pain. Such disparities can only be fully addressed when societies more globally recognize the impact of chronic pain for children and adolescents. The study of children’s pain originated with the nurses and physicians who cared for children and documented their under-treatment. Pain clinics for children were typically ‘founded’ by individuals who advocated within their centers for the minimal resources needed to treat children from an interdisciplinary perspective. Today, it is essential that society, as well as individuals, advocate on behalf of children to obtain data needed to ensure adequate health care resources and to apply the existing knowledge about pain assessment and pain management more consistently within our clinical practice.

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