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APPENDIX G EDUCATION IN PEDIATRIC PALLIATIVE CARE Bruce P. Himelstein, M.D.*and Javier R. Kane, M.D.† OVERVIEW Despite advances in medical care, many children still die throughout the world, making education in pediatric palliative care a universal need. Lack of provider and patient–family education has been cited as a major barrier to children and families accessing skilled palliative care . The purpose of this review is to address the current state of the art and state of the science in pediatric palliative care education. A review of current knowledge in palliative medicine education in general is beyond the scope of this manuscript; the previous Institute of Medicine (IOM) report  outlined a detailed analysis and recommendations for change in palliative medicine education. Rather, this review addresses the potential application of available educationally relevant content and methods to the care of the life-threatened child. Clear definitions of the educational objectives in pediatric palliative care hinge upon a clear definition of pediatric palliative care itself. As suggested by the American Academy of Pediatrics , throughout this review the theme of broader definition, earlier access, and a continuum of * Palliative Care Program Director, Children’s Hospital of Wisconsin; Associate Professor, Department of Pediatrics, Division of Hematology/Oncology, Medical College of Wisconsin. † Assistant Professor of Pediatrics, Division of Heme/Onc/Immunology, University of Texas Health Science Center; Director, Supportive and Palliative Care Program, Christus Santa Rosa Children’s Hospital; Medical Director, Pediatric Hospice Program, Christus Santa Rosa Hospice.
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educational opportunity throughout many stages of professional development are highlighted. Palliative medicine is the art and science of child-focused, family-oriented, relationship-centered medical care aimed at enhancing quality of life and minimizing suffering. Palliative care is a model of caring for patients and their families who suffer from life-threatening illnesses. Palliative care focuses on alleviating pain and other symptoms of suffering but also attends to the spiritual, emotional, psychosocial and physical needs of both the patient and the family. Palliative care aims to improve the quality of life of seriously ill children and their families throughout the disease experience and recognizes that helping patients achieve a peaceful death is one of the most important and rewarding services that a healthcare professional can provide. Palliative care completes the developmental circle of competent, compassionate care from birth to death, neither hastening nor prolonging death. Inherent in this definition is the possibility of delivering palliative care in partnership with curative care for children with life-limiting illness, or for children who may not die.  Several authors suggest that many of the skills required to provide good quality palliative care are “generic skills that are fundamental to the practice of medicine in any clinical sphere . . .” . In his critical review of palliative care education, MacDonald  comments that palliative medicine is often . . . listed in the litany of special interest groups that have worthy issues that should be discussed, but for which there is little room in the curriculum. But the principles of palliative care mirror the perceived changes in medical education which deans generally support. For example, who would disagree that our medical students should Spend more time in the community and in the homes of patients Develop a sense of whole person care and move away from a single minded interest in the biology of disease Learn to work in health care teams Develop improved skills in communication, and Consider medical issues in ethical terms Viewed in this light, palliative care education does not provide the student with information on a “special interest”; rather, the student has the opportunity to work in an environment fulfilling most of the goals of basic medical education. Palliative care is not a competitor, but rather a means to reinforce common ideals. It is within a broad framework that the future of pediatric palliative care education must be viewed.
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DEFICIENCIES IN AND BARRIERS TO PEDIATRIC PALLIATIVE CARE EDUCATION There are clearly many health professionals already involved in pediatric palliative care. This review will largely focus on healthcare professionals involved in the care of life-threatened children and to a lesser extent on allied health professionals. Physicians in Practice Pediatric oncologists have been viewed by many as role models in the care of the dying child. A survey of pediatric oncologists sponsored by the American Society of Clinical Oncology  demonstrated that 10 percent of responding pediatric oncologists reported receiving formal courses in pediatric terminal care in medical school, and only 2.2 percent reported a rotation in a palliative care or hospice service. Most alarmingly, the most common method reported by pediatric oncologists for learning about end-of life (EOL) care was “trial and error,” and many reported anxiety about having to work with dying children. These data echo those reported earlier by Raney et al. . As part of a global effort to improve cancer education in medical school, a survey was performed of identified cancer educators at all U.S. medical schools. Palliative care was identified by pediatric oncology and family practice educators as needing more undergraduate medical curriculum hours, but it was not on the list of the five cancer topics identified as most important by all respondents (these were early detection, diagnostic methods, tumor biology, cancer prevention, and natural history). Among those surveyed, 34 percent of pediatric oncologists and 28 percent of family physicians also indicated a need for new materials in palliative care (this was the fourth highest ranking area in need of new materials, after patient education material about cancer, nutrition, and epidemiology). Single-institution studies (e.g., ) have also demonstrated deficits in medical school instruction, resident and fellowship training, and continuing education in palliative care pediatrics. For example, in one such study the majority of assessed residents, fellows, and attending expressed a need for further support in dealing with death and dying. Primary pediatricians also have a critical role in palliative care, as described by the eloquent commentary of Morris Wessel  or the case discussion of O.J. Sadler . Primary providers not only care for dying children, but also may care for a dying child’s siblings or, even more commonly, children of dying adults. Further study about how to educate hospital and primary care physicians on how to maintain communication in the care of the dying child and how to keep primary physicians in practice up-
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to-date in the latest developments in the specialty of palliative medicine is needed. Educational opportunities in palliative care are scant for family practitioners and general practitioners. Efforts have been reported to improve EOL skills and knowledge for family practice residents  and for general practitioners in practice [13, 14] using didactic and experiential techniques. Troller  published a survey of rural general practitioners in New South Wales. Although a majority (95.2 percent) had treated patients with terminal illness, only 18.9 percent felt that they were adequately trained in palliative care when they entered general practice. Millar , in a study of Scottish general practitioner trainees, found that trainees were getting clinical experience in palliative care in their curriculum. MacLeod  found a similar interest in palliative care education in Bath District House Authority in the United Kingdom, and Lloyd-Williams reported a similar receptivity to expanded experiences in hospice as well as a similar curricular paucity in palliative care . These authors also addressed the interest of practicing generalists in increasing palliative care training and experience. Nurses Though nurses have been central to the development of the international hospice movement, educational opportunities for nurses are still rare. . Ferrell et al.  describe, for example, the project “Strengthening Nursing Education to Improve End of Life Care” funded by the Robert Wood Johnson Foundation. This project, in response to the 1997 IOM report, has as its goals improving the content regarding EOL care in nursing textbooks, ensuring the adequacy of content in end-of-life care, as tested by the NCLEX exam (National Council of State Boards of Nursing), and supporting key organizations in their efforts to promote nursing education and practice in end-of-life care. A survey of nursing school deans and faculty listed “goals of palliative care” as the weakest curriculum component. Efforts to create performance standards in palliative nursing are also published . Pharmacists A recent survey of close to 4,000 hospices demonstrated that only 10 percent of hospices trained pharmacy students, despite the fact that pharmacists may play an important role in interdisciplinary EOL care .
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Patient and Family The work of Collins and Wolfe demonstrate that children with cancer and other life-threatening disorders are suffering, and that physicians and families differ in reporting symptoms, with families always reporting more symptoms than physicians. Large gaps in communication with patients and families regarding prognostic information and other important therapeutic information have also been demonstrated [22, 23]. Physicians in Training Surveys of medical education in Europe, Canada, the United Kingdom, and the United States continue to demonstrate shortfalls in palliative care education, including great variability in the availability of palliative care courses, curricular hours, and faculty positions in palliative care [24–29]. Curricular content, approach, or efficacy cannot be evaluated in such surveys . Student survey data from the Liaison Committee on Medical Education (LCME), Association of American Medical Colleges (AAMC), and the American Medical Association (AMA), indicated that “while most medical schools reported including the content in the required curriculum, many medical students considered the education that they received to be inadequate .” Single-institution studies support these survey data ( e.g., ). The 2001 Medical School Graduation Questionnaire from the Association of American Medical Colleges (http://www.aamc.org) demonstrated that approximately 70 percent of students agree or strongly agree that biomedical ethics was adequately covered in the first and second years of medical school; 72 percent of students agree or strongly agree that professionalism was adequately covered, and 53 percent felt cultural competency was adequately covered. In 2001, end-of-life care instruction was felt to be appropriate by 64.3 percent of students surveyed and inadequate by 34.5 percent. Palliative care instruction was felt to be appropriate by 64 percent and inadequate by 35.2 percent of the students, compared to 59.3 percent and 39.9 percent, respectively, for 1999. Pediatric palliative medicine was not included as a question in this survey. The survey included an evaluation of medical student instruction in several areas of clinical medicine, some of which are relevant to palliative medicine and end-of-life care. Of students surveyed, 88.2 percent believe that their education on physician–patient communication skills was appropriate, and 84.2 percent felt that they received appropriate instruction on how to work as a member of a team with other health care professionals. Of interest, only 43.3 percent of medical students in 2001 felt that their
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instruction on pain management was appropriate, compared with 37.5 percent of students in 1999. 77 percent of these students felt their education on ethical decisionmaking was appropriate, compared to only 44.6 percent who felt that their education on legal issues was appropriate. Only 45.4 percent of students felt that their education on complementary and alternative medicine was appropriate. Regarding communication skills, 75 percent of students agreed or strongly agreed that they felt confident discussing treatment options with a woman with end-stage breast cancer, and 83.9 percent felt confident in their ability to initiate discussion of do not resuscitate (DNR) orders. Professionalism issues were evaluated by this survey. Most students noted that they learned aspects of professionalism, such as compassionate treatment of patients, respect for the privacy and dignity of patients, valuing honesty and integrity, and major ethical dilemmas in medicine (end-of-life care), during their clinical years. Pediatric Resident–Program Director Survey In order to assess the educational experiences of pediatric residents on palliative medicine and end-of-life care and to determine how these can be incorporated as part of their residency curriculum we conducted a survey of pediatric residency program directors and pediatric residents in training (J. Kane, C. Torkildson, C. Olney, B. Himelstein, manuscript in preparation). Fifty-five (22.4 percent) of 246 program directors and 98 (42 percent) of 235 pediatric residents responded to our survey. Key findings included the following: Thirty-seven (67.3 percent) program directors state that their residents were involved in end-of-life care situations. Directors in 23 (41.8 percent) programs believe that their pediatric residents receive direct palliative care education. Palliative care as a competency is considered “somewhat” to “very important” by 78.1 percent of the program directors surveyed. The overwhelming majority of program directors say that clinical competency to address physical (99.7 percent), psychosocial (98.2 percent) and spiritual distress (73.6 percent) is “somewhat” or “very important” in pediatric residency education. Residents believe that it is “somewhat” to “very important” that physicians provide pain and symptom management (99 percent), and psychosocial (99 percent) and spiritual support (76.6 percent) for their patients; 99 percent of residents reported participation in end-of-life care of at least one pediatric patient and 84 (85.7 percent) were actively involved in the care of a dying child. Hospice care is offered as a scheduled resident
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rotation in only one (1.8 percent) of the programs surveyed and few had any hospice experience. Scheduled or elective palliative care experiences are rarely available. Many residents noted being exposed to palliative care experiences in their general pediatric ward, hematology–oncology, pediatric, or neonatal intensive care and emergency room rotations. Issues in pain and symptom management and on how to communicate bad news are among the most common lecture topics available for residents. Forty (72.2 percent) program directors believe that there is at least one faculty member with experience in palliative medicine and end-of-life care, and 15 (27.3 percent) believe that they have no such faculty in their programs. Only 38.2 percent of program directors believe that their graduating residents are competent in pediatric palliative care. According to program directors, learning of palliative medicine and end-of-life care is best when delivered informally at the bedside of patients and during rounds. Eighty-two percent of directors believe that palliative care education should be continuous throughout their residency education. It should be noted that with a response rate of only 22.4 percent, there is no way to control for reporting bias. It is tempting to speculate that programs with stronger palliative care programming would be more likely to respond. However, given the limited response rate, these results should not be considered conclusive or necessarily representative. Experts in the Field Editorials, reviews, and commentaries abound suggesting the need to improve teaching of physicians and other health care providers about end-of-life care [33–50], in particular following the publication of the IOM’s first report in 1997 . Some also discuss the need for patient education in the conflicted culture in which death should be accepted as natural but in which youth is celebrated , some address the needs of children , and others bemoan the lack of “tangible investment” in and low prioritization of palliative care issues in the curriculum . As Doyle notes and Overton confirms [53, 54]: One fact seems indisputable, namely that only countries where palliative medicine has really become established and made much impact on professional education and clinical practice have been those countries where
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doctors chose to work full-time in this field, whether or not they were accorded specialty status. Joint Commission on Accreditation of Healthcare Organizations The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) is an independent, not-for-profit organization that is the nation’s predominant standards-setting and accrediting body in health care. Although JCAHO standards do not directly address health care professionals’ education, they may have a significant impact upon how health care organizations approach professional education. Standards from the Consolidated Accreditation Manual for Home Care (CAMHC, 2001-2002 edition) and from the Consolidated Accreditation Manual for Hospitals (CAMH, 2002 edition) relevant to care of the dying and age-specific care were obtained by request from JCAHO (Paul M. Schyve, M.D., Senior Vice President of JCAHO, personal communication, 12/19/01). Although there are no specific standards addressing pediatric palliative care in hospitals, home health, or hospice, end-of-life issues and age-specific care are addressed separately. For example, the CAMH “Assessment of Patients (PE) chapter” lists standards such as: PE.1 “Each patient’s physical, psychological, and social status are assessed.” PE.5 “The assessment process for an infant, child, or adolescent patient is individualized.” The “Patient Rights and Organization Ethics” (RI) chapter addresses requirements for hospitals to address ethical issues, patient involvement in care and care decisions, advance directives, withholding resuscitative services, forgoing or withdrawing life-sustaining treatment, and care at the end of life. Standard RI.1.2.8 states that “the hospital addresses care at the end of life.” In the description of intent, hospitals are required to address care issues such as pain and symptom management; respect for values, religion, and philosophy; involving the patient and when appropriate family in every aspect of care; and “responding to the psychological, social, emotional, spiritual, and cultural concerns of the patient and family.” Home health and hospice-specific assessment guidelines appropriately require that “the assessment and reassessment of infants, children, and adolescents are appropriate to the care or services provided” (PE.7). Although standards for care, treatment and services (TX) state that “the care of the dying patient optimizes his or her comfort and dignity” (TX.3.1), no specific standards exist addressing the unique needs of children.
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New pain management standards are also available (http://www.jcaho.org/standard/pain.html). The discussion of these standards also includes other aspects of palliative and end-of-life care. EDUCATIONAL CONTENT AND DOMAINS FOR PEDIATRIC PALLIATIVE CARE Papadatou  describes seven challenges in training health professionals in pediatric palliative care: definition of educational objectives, selection of teaching methods and content of training, definition and teaching of emotional involvement, support of training participants, promotion of interdisciplinary collaboration, evaluation of the training process and its outcomes, background and skills of educators. She also outlines the necessary domains of the educational approach: Cognitive: “acquisition of information and knowledge”; Affective: “acknowledgment and exploration of personal feelings triggered by the interaction and involvement with young patients and family members”; Behavioral: “development of specific skills”; and Social:“the actual provision of health services within a specific social and cultural context.” A multi-institutional or multispecialty needs assessment in pediatric palliative care has not been performed. Single-institution assessments in adult palliative medicine have been reported (e.g., ); there is one published on pediatric palliative care  for residents. The Educational Development Center has also performed a needs assessment in several institutions; this work to date has not been published. Significant overlap with principles of adult palliative care is apparent. For the child patient, however, many of these topics have important distinctions. For example, legal issues in children may involve lack of decision-making capacity of children or misinterpretation of “Baby Doe” regulations. Related to the child as he/she changes through normal or abnormal development, there will be a changing knowledge and skill base regarding communication issues, understanding the experience of death and dying, symptom assessment and management, quality of life, and school and com-
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munity issues. Knowledge of the changing physiological responses to pharmacological intervention is also required. In addition to the cognitive, affective, behavioral, and social domains, several authors have attempted to categorize another important domain. Coles  discusses the need in palliative care to teach “professional artistry,” emphasizing the dilemmas and uncertainties of professional practice, a model of professionalism that may be mutually exclusive of the “technical rational” approach that involves technical competencies and expertise. Corr  suggests a “valuational dimension” that “refers to the identification, articulation, and affirmation of one’s personal values in relation to life and death.” Concepts such as altruism, compassion, humanism, and empathy fall under this category—what are personal attributes and values that impede or propel learning in pediatric palliative care, what constitutes good “bedside manner?” This dimension also addresses the “hidden curriculum” in medical education, the ways in which “knowledge and behavior get constructed, outside the usual course materials and formally scheduled lessons” . We reviewed the AMA’s Education for Physicians in End-of-Life Care (EPEC) Curriculum, the UNIPAC self-study program produced by the American Academy of Hospice and Palliative Medicine (AAHPM), the Children’s International Project on Palliative/Hospice Services (ChIPPS) Compendium of Pediatric Palliative Care, sponsored by the National Hospice and Palliative Care Organization (NHPCO); the End-of-Life Nursing Education Consortium (ELNEC) curriculum; the Toolkit for Nursing Excellence at End of Life Transition (TNEEL); and additional literature references including reports of parent-identified educational domains [11, 45, 60–63]. The following list of palliative care topics and aspects was generated: Principles of palliative care Death and dying Epidemiology of death in childhood Home care and hospice care Assessing goals of medical care Advanced care planning such as DNR or advanced directives Communication of bad news Futility Withholding or withdrawing of treatment Assessment and management of symptoms Grief and bereavement Cultural sensitivity Self-care Legal and ethical issues
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Interdisciplinary team care Spiritual care Psychosocial care Practical post-death issues (death certificates, morgue, medical examiner) Quality improvement and research methodology in palliative care Compassion, humanity, humility, and altruism Health care delivery issues including reimbursement and regulation Complementary and alternative medicine School and community issues Depression and mental illness EDUCATIONAL METHODOLOGIES AND OUTCOME MEASURES Educational Methodologies A wide variety of teaching methods can be found in the adult palliative care literature, including didactic sessions, supervised clinical practice, computer-based learning, sensitivity groups, journal keeping, mentoring, role play, simulated/standardized patients, video or film viewing, small group discussion, clinical case discussion, interdisciplinary teaching, hospice and home visits, portfolio learning, and psychological training such as cognitive-behavioral methods [64–67]. There are few published data comparing these methods or combinations of these methods. A comprehensive review of educational techniques in general is beyond the scope of this review. What follows are some examples from the literature of current thought regarding educational techniques in palliative care: Strictly didactic or strictly experiential learning methodologies in palliative care may fail unless personal meaning is achieved in a cognitive framework. According to Papadatou , Therefore a challenge for educators is to define a theoretical and conceptual framework to support instructional strategies that combine both didactic and experiential approaches in order to allow participants to acquire knowledge that becomes personal and shared.” Standardized Patients Greenberg reported an initiative to use standardized parents to improve crisis counseling skills surrounding pediatric death in the emergency room setting [68, 69]. Pediatric residents and fellows were videotaped and observed twice while communicating bad news about a child dead on arrival to standardized parents. A content checklist was developed by survey, and
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new content requirement in EOL care, there is currently no standard by which LCME can determine whether training programs are, in fact, meeting the new requirements (D. Weissman, personal communication). Liaison Committee on Medical Education (LCME) American Medical Association 515 North State Street, Chicago, IL 60610; (312) 464-4933 Association of American Medical Colleges 2450 N Street, N.W., Washington, DC 20037; (202) 828-0596; http://www.lcme.org/ LCME is a joint venture of the AMA and the American Association of Medical Colleges (AAMC) that accredits U.S. medical schools. Recent revisions to accreditation standards from LCME include a standard on end-of-life care, but it is very broad in its scope: “Clinical instruction should cover all organ systems, and must include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care.” Additional content guidelines do fit within the broad principles of pediatric palliative care, including “ethical, behavioral, and socioeconomic subjects pertinent to medicine”; “broad-based clinical education programs that equip students with the knowledge, skills, attitudes, and behaviors necessary for further training in the practice of medicine”; “the need for students to be concerned with the total medical needs of their patients and the effect on their health of social and cultural circumstances”; “an understanding of the manner in which people of diverse cultures and belief systems perceive health and illness and respond to various symptoms, diseases, and treatments”; and “the LCME encourages experimentation that will increase the efficiency and effectiveness of medical education.” Council on Medical Student Education in Pediatrics (COMSEP) American Board of Pediatrics, 111 Silver Cedar Court, Chapel Hill, NC 27514; (919) 942-1993; http://www.unmc.edu/Community/comsep/ COMSEP fosters excellence in undergraduate medical education in pediatrics. Functioning under the auspices of the Association of Medical School Pediatric Department Chairmen (AMSPDC), COMSEP is the official organization of North American educators with administrative responsibility for undergraduate medical education in pediatrics. It promotes the development, dissemination, and evaluation of curricular materials and educational resources through interinstitutional collaboration. It advocates for research in pediatric medical education. COMSEP has produced a “mod-
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ule curriculum” for pediatric clerkships. Despite discussion of such conditions as trauma, congenital and genetic disorders, and chronic illness, there is no mention of palliative, end-of-life, or hospice care as core competencies or learning objectives. Other Educational Standards or Programs Fellowship Training Standards The American Board of Hospice and Palliative Medicine has created training guidelines for fellowships in palliative care (available at www.aahpm.org, submitted for publication) as part of the process of seeking ACGME certification for the field. Several academic centers now sponsor fellowship training programs in palliative care , and the U.S. Department of Veterans Affairs has also established a six-center “Interprofessional Fellowship Program in Palliative Care” (http://www.va.gov/oaa/flp/hubsite_announcement.asp). However, specific fellowship training programs and standards for pediatric palliative care do not currently exist in the United States. Some age-appropriate language was inserted in the current draft of the training standards to affirm the need to educate adult providers in the care of life-threatened children, but a specific track for pediatric palliative care graduate training was not created in the initial guideline iteration. Abroad, a Pediatric option exists for the diploma in palliative medicine as well as the master in science in palliative medicine program, a one-year academic course offered at the University of Wales College of Medicine. Courses and Clerkships The literature is replete with examples of interesting courses and programs in palliative care. Most of these reports could not be analyzed for pediatric content. No peer-reviewed reports of clerkships dedicated to palliative care for children could be located, although they certainly exist. In some cases, goals, objectives and evaluations are described. Examples of targets for education include home care agencies , undergraduates [132, 133] and medical students [60, 134–143]. The health care delivery environment has a clear impact on the type of education in end-of-life care necessary. For example, Bascom et al. make an interesting observation that in Oregon, where hospice utilization is higher than in many other parts of the country, the acute care hospital is no longer a major site of death. Surveyed medical students demonstrated that many have limited exposure to death, with 42 percent of graduating students never having witnessing a death .
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House Staff and Specialty Training At the house staff level, reports are published regarding elective experiences and courses in hospice or palliative care (e.g., [145, 146]). Von Gunten et al.  created a hospice/palliative medicine rotation for fellows training in hematology–oncology. Improvements in fellows’ skill in pain and symptom management and understanding of hospice and palliative care were reported. Practicing Physicians and Continuing Education Latimer et al.  described 10 years’ experience with an interdisciplinary (faculty and learner) five-day palliative care course for practicing health professionals. The course attracts primarily nurses and physicians, but also social workers, physical or occupational therapists, and clergy. A wide variety of learning techniques are offered; pediatric issues are clearly outlined in the course curriculum. Evaluations have been positive in course satisfaction and in the likelihood of causing practice change. Emergency Medical Services, Prehospital Personnel In addressing the needs of prehospital personnel, a 50-minute educational module entitled “Coping with the Death of a Child” has been created by an interdisciplinary team piloted as part of the Pediatric Advanced Life Support (PALS) curriculum. The module met its educational objectives in pilot work, but changes in knowledge or skills, or long-term retention of curricular content, were not assessed . The Pediatric Education for Prehospital Professionals (PEPP) course, sponsored by the American Academy of Pediatrics, is a comprehensive, innovative, and highly visual pediatric course for both basic life support (BLS) and advanced life support (ALS) providers, with case-based lectures, live action videos, hands-on skill stations, and small-group scenarios (http://peppsite.com). This course has been specifically designed for first responders, emergency medical technicians (EMTs) and paramedics. The one-day BLS course is geared toward EMT-basic, and the two-day ALS course toward EMT-intermediate and paramedic providers. A review of the outline materials for this course did not demonstrate content in pediatric end-of-life or palliative care. Pharmacy The Faculty of Pharmacy and Pharmaceutical Sciences at the University of Alberta, Canada, has created an elective experience—the “Pain Mod-
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ule”—for final-year pharmacy students. The course includes both traditional and newer educational formats including computer-mediated conferencing (CMC) and home or hospice visits. Evaluation was performed by survey and focus group, demonstrating not only favorable reviews of the educational techniques, but also something rare in the medical education literature, correlations between learning styles and preferred educational formats . INTERNET RESOURCES VandeKieft et al.  performed a comprehensive review of end-of-life care Web sites, screening for clear ownership or sponsorship, clear authorship, contemporary accuracy, readability, and ease of use. Attempts were made to evaluate privacy, conflicts of interest, goals of the site, date of last update, and availability of downloadable materials including PDF files. Established review criteria for health-related Web sites were noted to be absent. Depending upon the search engine and search strategy, millions of Web sites were identified; several quality end-of-life Web sites were identified. In their article, a selection of key sites meeting criteria was found. The End of Life Physician Education Resource Center (EPERC) is a central repository for educational materials and information about EOL issues (www.eperc.mcw.edu). The purpose of EPERC is to assist physician educators and others in locating high-quality, peer-reviewed training materials. This web site supports the identification and dissemination of information on EOL training materials, publications, conferences, and other opportunities. There are several pediatric-specific resources available, and the “Fast Fact” series of fact sheets about EOL topics has addressed some pediatric issues. From the patient or family perspective, there are no published data regarding availability and appropriateness of Internet end-of-life or palliative care content. Berland et al. recently performed a study to examine accessibility, quality, coverage, and accuracy, as well as reading grade level, for Internet resources regarding breast cancer, depression, obesity, and childhood asthma. They found that less than 25 percent of a search engine’s first pages of links led to relevant content, less than half of English and less than a quarter of Spanish Web sites contained more than minimal clinical coverage, and all English and most Spanish Web sites required a greater high school reading proficiency. These results, although not specific for end-of-life care, suggest that efficient access to understandable health-related Internet content is a nontrivial matter .
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Representative terms from entire chapter: