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and supporting statements devised by the Joint Commission on the Accreditation of Hospitals (JCAHO, 2001). Specific standards now state that “patients have the right to appropriate assessment and management of pain” (standard RI.1.2.8), “pain is assessed in all patients” (standard PE.1.4), and “patients are educated about pain and managing pain as part of treatment, as appropriate” (PF.3.4). Advocates have also adopted the phrase “pain: the fifth vital sign” to help increase professionals’ awareness of pain and encourage the implementation of explicit pain management guidelines and protocols (APS, 1997).
The Joint Commission standards mention other aspects of palliative and end-of-life care. As noted in Chapter 5, one (RI.1.3.5) mentions pastoral care and other spiritual services (JCAHO, 1998). A broader standard (RI.1.2.7) states “the health care organization addresses care at the end of life” (JCAHO, 2001). The Commission explains the intent of the latter standard as covering
provision of appropriate treatment for any primary and secondary symptoms, according to the wishes of the patient or the surrogate decision maker;
aggressive and effective management of pain;
sensitive issues such as autopsy and organ donation;
respect for the patient’s values, religion, and philosophy;
involvement of the patient and, where appropriate, the family in every aspect of care; and
attention to the psychological, social, emotional, spiritual, and cultural concerns of the patient and the family.
The committee believes that it is appropriate to generalize the expectation of aggressive and effective pain management to the aggressive and effective management of all serious symptoms. This would likely encourage more active efforts to develop evidence- and consensus-based guidelines for symptoms in addition to pain and to build a broader and stronger evidence base for effective symptom management (IOM, 1997; Goldman, 1999; ChIPPS, 2001; Levetown, 2001).
Unfortunately, the limited research on effective pharmacologic and other symptom management approaches for children is a concern. In some cases, symptom management and other guidelines for adult care may serve as models or starting points for pediatric guidelines, although the latter would likely have a more limited evidence base and more complex analytic task relating to children’s developmental differences and other special dimensions of pediatric care. For example, as one resource, pediatric oncologists could look to the series of curriculum modules that the Ameri-