I encountered 2 similar comments this week: “we don’t think she experiences pain” and “there remains uncertainty… whether [she] has sufficient awareness to experience the burdens associated with pain.” The first comment was shared by a colleague at another institution involved in the care of a child with severe impairment of the central nervous system (CNS) with pain features who was looking for suggestions about how to respond. The second comment was in an ethics report that I received regarding a child with similar impairment. The ability to identify and treat pain in this group, often referred to as children with severe neurologic impairment (SNI), has greatly improved, but these comments remind me that such children remain vulnerable to assumptions about pain.
Hauer JM. Pain in Children With Severe Neurologic Impairment: Undoing Assumptions. JAMA Pediatr. 2018;172(10):899–900. doi:10.1001/jamapediatrics.2018.1531
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