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4. Educational Initiatives
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85 The provision of excellent pediatric palliative care is contingent on professionals who are prepared to deliver this complex care. Fortunately, in recent years there have been significant advances in the education of professionals both in formal training programs and through continuing education. This chapter summarizes several of these initiatives, including a model of nursing education, pediatric inpatient care, a model of interdisciplinary education, resident/fellowship medical education, and physician continuing medical education. Although there are differences across these programs intended for the unique needs of each population, there are also important “common threads,” as each program has advanced both the core content needed in the field and innovative methods of teaching. A Model of Nursing Education: The ELNEC Project Nurses spend more time with patients and families facing life-limiting illness than any other health care professional. Despite the fact that nurses are intimately involved in all aspects of palliative and end-of-life care, research has demonstrated that major deficiencies exist in nursing education on these topics. To understand why deficiencies in care exist, researchers at the City of Hope National Medical Center implemented a project titled “Strengthening Nursing Education to Improve End-of-Life Care.” This project occurred between 1997 and 2000 and was supported by the Robert Wood Johnson Foundation; it demonstrated that deficits in nursing textbooks, nursing school curricula, and continuing nursing education have all contributed to the lack of nursing readiness to provide palliative and end-of-life care for children and their families (Ferrell et al., 2000). 4 Educational Initiatives Betty Ferrell, Ph.D., R.N., Hollye Harrington Jacobs, M.S., R.N., M.S.W., Jeffrey C. Klick, M.D., John M. Saroyan, M.D., Elana E. Evan, Ph.D., Margaret Comeau, M.H.A., Sarah E. Friebert, M.D., and David Browning, M.S.W., B.C.D. 86 societal and institutional issues In 1997, the document “Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care” (AACN, 1997) was produced. It outlined key competencies and guidelines for nursing education and end-of-life care and has become recognized as a key statement describing the knowledge and skills required for nurses to provide quality care to children facing end-of-life issues. Results from comparable national studies also demonstrated that nurses were not prepared for or comfortable with providing optimum palliative and end-of-life care to children and their families (Ferrell et al., 2000; Field and Behrman, 2003). In 1999, the American Association of Colleges of Nursing partnered with the City of Hope to propose a national effort to rectify these deficiencies and to create nursing education that would meet the recommendations of the “Peaceful Death” document. The national project, End-of-Life Nursing Education Consortium (ELNEC), was developed and launched in 2000. The original project assisted nurses in addressing the myriad of physical, psychological, social, and spiritual needs facing those in end-of-life settings (Sherman et al., 2005; Matzo and Hijjazi, 2008). Even though the initial eight ELNEC courses, supported by the Robert Wood Johnson Foundation, were designed for patients across the life span, it became clear early in the project that a specific curriculum should be devoted to meeting the distinct and unique needs of children. A pediatricspeci fic ELNEC training course was conceptualized in 2001. A pediatric ELNEC course (ELNEC-PPC) was piloted in 2002, bringing together 20 pediatric palliative care expert advisors to adapt the ELNEC core curriculum to develop a pediatric-specific version. The curriculum was developed from this pilot course, and the first national ELNEC-PPC course was held in 2003. Since its inception, more than 725 nurses from 50 states have completed ELNEC-PPC. To date, eight national courses have been offered. Support for the first course came from the Robert Wood Johnson Foundation, and the third and fourth courses were funded in part by the Aetna Foundation. CURRICULUM The ELNEC-PPC program is a 2-day “train the trainer” course implemented with the intention that the pediatric nurse participants will disseminate the information in clinical and/or university settings. The curriculum consists of 10 pediatric-specific modules: Nursing Care in Pediatric Palliative Care, Special Considerations in Pediatric Palliative Care, Communication, Ethical/Legal Issues, Cultural Considerations, Pain Management, Symptom Management, Care at the Time of Death, Loss/Grief/Bereavement, and Models of Excellence in Pediatric Palliative Care (table 4.1). During the [3.237.65.102] Project MUSE (2024-03-28...