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Paediatr Child Health. 1998 May-Jun; 3(3): 163–164.
PMCID: PMC2851321

Care of the child with chronic illness: Are we taking care of their pain?

Gerri Frager, RN MD FRCPC


It has only been a few short years since the standard practice relating to pain management for neonates undergoing surgery changed to one that was humane. Jeffrey, a premature infant, underwent a patent ductus arteriosus (PDA) ligation much like other children of the 1970s and early 1980s; the surgery proceeded without any anaesthetic or analgesic. His mother first helped to raise the collective consciousness about pain management in the very young (1). Incredibly enough, it was because the standard of care at the time was such that the work of KJS Anand (2,3) was able to be approved by an ethics committee. His work raised the scientific and professional consciousness about pain management in the very young. Anand’s (2,3) carefully designed randomized controlled studies definitively demonstrated that infants who received intraoperative and postoperative analgesia had measurably lower stress-related biochemical parameters and decreased morbidity compared with the control group who received the standard of care – little or nothing for pain relief (2,3).

Astounding, isn’t it? One may ask what this discussion has to do with paediatric pain management as the millennium approaches. Does this example in any way reflect current practice? The old barriers constructed from fear and ignorance have been leapfrogged: fear about the adverse effects that analgesics might induce in an ill or young child; fear of causing addiction in the young; ignorance about the presence of pain in the young child; and ignorance about how to assess and approach pain in a child. The changes in paediatric pain management have been exponential, and welcome strides have been made since the 1970s when Eland and Anderson (4) first highlighted the tremendous discrepancy between pain management for children and adults in their study of postoperative pain. Holding children down for their bone marrows in my resident days (not all that long ago) has faded in the bright light of advances made in procedure-related pain management. Over the past decade, a plethora of paediatric pain assessment tools have been cultivated. Even the difficult area of assessment of nonverbal children and the cognitively impaired population is thankfully being addressed (5). There has been an extensive amount written about the chronic pain patterns of childhood colic, headache and abdominal pain. The pain syndromes of reflex sympathetic dystrophy and fibromyalgia have similarly received increased press.

Doctors have emerged from the darkness of pain management of the 1970s. The question for current reflection is this: What is the status of pain management for the child with a chronic disease? The predominant chronic childhood diseases in which pain has been extensively addressed are cancer and sickle cell disease (69). However, even with the tools available for both the assessment of pain and its amelioration, these techniques have not consistently been incorporated into caring for children living with cancer and sickle cell disease. As well, this acquired knowledge is infrequently applied to the other painful chronic diseases of childhood.


The basic ideological approach to pain management is the first obstacle challenging the delivery of the best care. A child’s pain as a consequence of the illness is often not valued other than as an indicator of disease or a trigger for further investigation. It is relatively uncommon for clinicians to treat the distress accompanying the symptom while pursuing the meaning of the symptom. Doctors need to get better about doing both at the same time. A concrete example is pain management in the setting of something like vertebral collapse secondary to steroid-induced osteoporosis. This severe pain exacerbated by movement perpetuates a progressively downward spiral of decreased activity because of pain, leading to increased bone resorption and worsening osteoporosis, with the attendant sequelae of morbid bone events, such as further fractures chased by more pain and decreased mobility, and so on. Once the impact of pain is better appreciated and the benefits of providing relief more clearly understood, treatment directed to relief can accompany investigation and treatment of the cause.

The second barrier to providing the best care is the lack of regular pain assessment. With chronic pain, the obvious behavioural observations indicative of pain are often markedly attenuated or absent. Physiological parameters, such as pulse, blood pressure, diaphoresis or other characteristics such as facial expression and crying, are unreliable indicators of pain in a child suffering chronic pain. As should occur with acute painful events, a child with chronic illness must be asked about his or her pain (10). In instances where a child is unable to communicate information about his or her pain verbally, behavioural indicators consistent with chronic pain are helpful. Such items include body position, degree of interaction and change from the child’s usual pattern of play and sleep (5,11). The next step of mobilizing to manage pain is helped by assessing pain and documenting the findings as part of the functional inquiry for all admissions and out-patient visits.

Additional significant barriers to managing persistent pain remain. The medical community now has the knowledge that addiction in patients who have their pain treated with opioids is no greater than the incidence in the general population (less than 1%) (1214). It is known that addiction is a psychological dependence relating to the abnormal need and acquisition of opioids for reasons other than for pain relief. Health professionals know that physiological dependency, manifested by withdrawal symptoms when opioids are abruptly discontinued, is not addiction and is easily managed by a tapering of opioids. Despite this widespread knowledge, fears about addiction inhibit appropriate prescribing of opioids. Similarly, studies conducted in the paediatric population have unequivocally demonstrated that outside of the neonatal period, children are at no greater risk of respiratory depression than adults, with a very low incidence of life-threatening respiratory depression of approximately 0.09% (1517). Even in the neonatal population, opioids can be safely administered by starting with low doses and carefully titrating to effect while monitoring the child. Despite this knowledge base, health professionals continue to provide inferior patient care because of unsubstantiated fears.


The first step towards the best care is to integrate into practice what is already known about pain assessment and its management. Health professionals need to become familiar with and confident in basic pain management principles in much the same way other aspects of disease management are addressed. If faced with a particularly difficult pain problem, clinicians need to know the resources available and how to ask those with greater expertise for help. Children such as Tracy Latimer and her family should act as an alarm for us, waking us to the importance of pain and its relief. Health professionals also need to fight for research in paediatric pain and symptom management. In the case of chronic disease, a child usually lives for many years with a condition that affects his or her daily life. It matters greatly to a child to address how he or she feels, and families long remember the quality of comfort provided. When managing a child’s pain and other symptoms with as much enthusiasm and rigour as is provided in other aspects of his or her care, the magnitude of the rewards shared can be quite surprising.


Dr Frager is a faculty scholar supported by the Open Society’s Institute Project on Death in America.


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