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The tragic case of Tracy Latimer is well known. Tracy, a child with severe cerebral palsy, who could not communicate, was killed by her father to spare her the continuing pain that he saw as her fate. Mr Latimer was found guilty of murder and, because the judge perceived extraordinary circumstances, Mr Latimer was sentenced to two years imprisonment (one year to be served in his home).
The case aroused a great deal of passion and discussion in the media. The focus was on the right to live and the right to die. Unfortunately, much of the debate missed the most important point. Children such as Tracy deserve, and should have, as a right, adequate health care including management of their pain. The details of Tracy’s pain assessment and management are not publicly known. All we know is that her father felt that she was in significant pain. Although there are many instances of excellent care, including pain management for children such as Tracy, the provision of care is so spotty and inconsistent across Canada that it is accurate to state that, as a group, children with severe and debilitating conditions have been systematically denied sufficient health care.
Children like Tracy are at high risk for pain because their medical condition may cause pain, their treatments may be painful, they may have more accidents, their behaviour may mask pain expression, and many behaviours that are typical pain indicators in others may be inconsistent and difficult to interpret in these children (1,2). Only a handful of studies have investigated pain in this population (2,3). The challenges of assessing pain in nonverbal children with severe handicaps are considerable, but systems focusing on behaviour are being developed (2,3). Innovative methods requiring considerable research (4) need to be developed. Even before we have well-validated measures, a high index of suspicion of pain is important. Many of the same behavioural indicators of pain occur in these children as in healthy children, but their expression may be somewhat idiosyncratic (2). For example, a child who has difficulty communicating is likely to cry when he or she is in pain. Facial expressions may also differentiate pain from other distress. Parents often discriminate specific cries, noises or facial responses for specific needs. Parents should always be asked about their child’s pain, and the parents’ perceptions should always be taken seriously. Health care providers should be aware that parents may not specifically ask for pain management because they assume that if anything could be done, it is already being done by those caring for their child.
Treatment strategies are likely to be similar to those used for other children, but there may be particular problems (eg, pain from spasticity) that are rare in other children. Appropriate positioning and assistive devices are critically important for pain control in many of these children. Protocols for assessment and management of pain in these children must become standard care. An iterative empirical approach where something is tried and the results assessed may be particularly helpful for children with severe disabling conditions.
Pain management is important but we must not forget the suffering that children and families endure. Pain-related suffering comes not only from having pain or seeing a loved one in pain, but from the sense of having no control and from the belief that the pain will not be relieved. Pain-related suffering is exacerbated by exhaustion and depression and by the presence of other distressing symptoms (eg, pruritus or dyspnea). Although pharmacological interventions are often useful, psychological, social and spiritual approaches are likely to be at least as important. Many of these supports come from the social network of friends and community, but health care providers play an important role in permitting and encouraging their use. For example, a mother who is exhausted and depressed because there is no respite care or because she is spending frustrating hours seeking and coordinating health care for her child will have difficulty finding time for personal or spiritual reflection.
Families with children who have severe and disabling conditions need practical assistance such as respite care and in-home support to help relieve the burden. Mothers of children with chronic health problems bear much of the direct burden of care and may be at particular risk for depression. They need our understanding and our cooperation.
The December 2, 1997 policy statement of the Canadian Paediatric Society is succinct and accurate in urging “all institutions and agencies that are responsible for the care of children with severe and disabling conditions to assume as a priority the provision of quality respite care, in-home support, and expertise in pain management” (5). We must keep lobbying to provide the needed health services for children and families. We must not fail families who face challenges like the Latimers.