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in end-of-life care, and only 2 percent reported a rotation in a palliative care or hospice service. Unstructured and unguided learning by experience puts patients and families at risk of much preventable suffering.
Most efforts to improve education in palliative, end-of-life, and bereavement care, not surprisingly, have emphasized older adults. Recently, however, several educational initiatives have focused on children who die and their families. For example, a new text on palliative nursing includes chapters on pediatric care (Ferrell and Coyle, 2001), and succeeding editions of the major text on palliative medicine have been enriched by discussions of care for children who die (Doyle et al., 1998). A recent manual on palliative medicine for psychiatrists also includes chapters on pediatric care (Chochinov and Breitbart, 2000). A series of self-study programs developed by the American Academy of Hospice and Palliative Medicine will include a monograph on pediatric care. The National Hospice and Palliative Care Organization and the Children’s International Project on Palliative/Hospice Services are also developing educational materials.
The 1997 Institute of Medicine (IOM) report on end-of life care included an extensive examination of health professions education. This chapter draws on that discussion, much of which applies generally to the education of pediatricians and other professionals who care for children who die and their families. It also draws on other pediatric-specific sources, including Appendix G. The rest of this chapter considers
basic elements of competence-building education in pediatric palliative and end-of-life care,
deficiencies in current professional education in palliative and end-of-life care,
responses to those deficiencies, and
directions for further changes in health professions education.
The committee recognizes that educational reforms, albeit a commonly urged strategy for changing clinicians’ attitudes and practices, are often difficult to achieve and that documentation of their success (especially over the long-term) in achieving desired objectives is often sparse. If the rewards for clinicians—financial, professional, and organizational—are not supportive of these objectives, then educational changes may be more symbolic than consequential. Educational reform is certainly not “the” solution to deficits in palliative and end-of-life care and might sometimes distract from the pursuit of other, potentially more important changes. Nonetheless, the objectives and information emphasized in health professions education are important symbols of what the professions should value. Educational reforms—and persistence in seeking and evaluating such reform—are one