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Institute of Medicine (US) Committee on Palliative and End-of-Life Care for Children and Their Families; Field MJ, Behrman RE, editors. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington (DC): National Academies Press (US); 2003.

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When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families.

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Bruce P. Himelstein, M.D. * and Javier R. Kane, M.D.


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 [1].

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 [2] 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 [3], throughout this review the theme of broader definition, earlier access, and a continuum of 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. [4]

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 . . .” [5]. In his critical review of palliative care education, MacDonald [6] 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.


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 [7] 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. [8]. 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., [9]) 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 [10] or the case discussion of O.J. Sadler [11]. 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-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 [12] and for general practitioners in practice [13, 14] using didactic and experiential techniques. Troller [15] 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 [5], in a study of Scottish general practitioner trainees, found that trainees were getting clinical experience in palliative care in their curriculum. MacLeod [16] 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 [17]. These authors also addressed the interest of practicing generalists in increasing palliative care training and experience.


Though nurses have been central to the development of the international hospice movement, educational opportunities for nurses are still rare. [18]. Ferrell et al. [19] 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 [20].


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 [21].

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 [2429]. Curricular content, approach, or efficacy cannot be evaluated in such surveys [30]. 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 [31].” Single-institution studies support these survey data ( e.g., [32]).

The 2001 Medical School Graduation Questionnaire from the Association of American Medical Colleges ( 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 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 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 [3350], in particular following the publication of the IOM's first report in 1997 [2]. 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 [51], some address the needs of children [52], and others bemoan the lack of “tangible investment” in and low prioritization of palliative care issues in the curriculum [25]. 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 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.

New pain management standards are also available ( The discussion of these standards also includes other aspects of palliative and end-of-life care.


Papadatou [55] 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., [56]); there is one published on pediatric palliative care [57] 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 community 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 [46] 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 [58] 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” [59].

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, 6063]. 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




Withholding or withdrawing of treatment


Assessment and management of symptoms


Grief and bereavement


Cultural sensitivity




Legal and ethical issues


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

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 [6467]. 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 [61],

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 standardized assessment measures were used to examine interpersonal skills. Feedback was provided immediately following the first session, and residents were re-rated with a different standardized parent 4–10 weeks later. Improvement in addressing content categories and in counseling skills was demonstrated; durable changes and the need for reinforcement of skills were not explored.

Other models of standardized patient use in teaching delivery of bad news, pain assessment skills, or end-of-life skills have been published [7072]. An impartial observer should be considered a part of standardized patient evaluations [73]. A recent publication describes the creation of a standardized family with 16- and 20-year-old children to teach interpersonal skills, interviewing, communication, counseling, and history-taking skills for medical students [74]. One recent report describes the successful use of children as standardized patients [75]. Standardized approaches to teaching differences between communication with adult patients versus adult family members with life-threatened children could not be found.

Interdisciplinary Teaching and Learning

Wallgren-Pettersson et al. performed one of several early trials in the use of interdisciplinary teaching, in this case surrounding the care of chronically ill children. The seminar course, combining medical, nursing, and social work students, was well received overall; however, outcomes designed to measure any changes in students' behavior following the seminar were not performed [76].

Programs specifically designed to improve the function of learners in interdisciplinary teams are also reported widely in the literature (review in [7779]). Examples of educational approaches include the Geriatric Interdisciplinary Team Training (GITT) program [80], courses or miniresidencies [81, 82], and approaches such as the “Party Planner” more akin to teamwork development programs in the business world [83]. Few objective data, however, are available to demonstrate the efficacy and durability of such programs in changing learner behaviors.

Computer-Based Learning

Reed-Thompson et al. [84] explored the efficacy of a multimedia CD-ROM cancer pain management module. Although effective in meeting some of its educational objectives, the authors appropriately caution that getting physicians to use the CD-ROM may be a significant challenge.

Mentoring or Supervised Experience

Sulmasy et al. [85] demonstrated the efficacy of an ethics education initiative in changing physician behavior in a large urban residency program. The program included didactic and experiential components; an ethicist was added to the care team in the intensive intervention arm of the study. The researchers documented changes in the rate at which concurrent care concerns (such as use of antibiotics, nutrition, and spiritual needs) were addressed in patients with DNR orders. Durability of these changes following the intervention was not explored.

Home Health or Hospice Experience

Changes in resident attitudes, knowledge, supervisory assessment, and patient reactions to home visits were demonstrated in a second- and third-year family practice resident home health rotation [86]. Faculty needs for committed time to program development, further needs to refine evaluative tools, and the difficulty inherent in scheduling home visits for hospital-based residents were noted. Similar programs have been described elsewhere [87, 88].

Portfolio Learning

Finlay et al. [89] described a randomized trial of portfolio learning in cancer education. The project aimed to give students a “holistic understanding” of disease and treatment impact on patients and families as well as of the natural history of disease. In this method, students are assigned one-on-one to a patient, and their experience, commentary, readings, press cuttings, and photographs are recorded in a self-formatted portfolio. Study participants also had faculty mentorship. In OSCE (Objective Structured Clinical Examination) evaluations performed at the end of the course of the intervention, students in the intervention group showed trends toward improved factual oncology knowledge as well as performance in role play; durability of change was not assessed at later time points.

Psychological Approaches

Razavi et al. [6567] performed a well-designed, executed, and evaluated trial of a brief psychological intervention group for health care professionals. Although short-term results were promising in several aspects such as attitudes toward death or self-concept, particularly for those subjects starting out with the most negative attitudes, durable results were not demonstrated.

Family Caregivers as Educators

No references specifically addressing the utility of family members and/ or caregivers as educators in end-of-life or palliative care could be found.

Empathy Training

The question of whether or not empathy can be taught is debated [90]. Several published reports demonstrate effective educational approaches to teaching empathy [9193]. Although empathic ability in medical students does decline over time following specific training, durable effects can still be demonstrated up to three years later [94].

Outcome Measurements

Outcome measures for educational interventions are widely available. For example, the Accreditation Council on Graduate Medical Education (ACGME) Outcomes Project and the American Board of Medical Specialties (ABMS) recently reviewed and compiled a group of these measurements in the “Toolbox of Assessment Methods,” which outlines appropriate evaluative measures for a variety of teaching methodologies. A copy of the toolbox is available at the Web site Important educational outcomes include both short-term and long-term improvements in knowledge (cognitive objectives), attitudes (affective objectives), and behaviors (psychomotor objectives). Measurement of patient and family outcomes resulting from educational intervention is also important.



Several recent reviews of nursing texts [9598] and general medical texts [99, 100] for content regarding palliative and end-of-life care have demonstrated significant deficiencies, especially regarding information about social, spiritual, family and ethical issues. Pediatric texts were not significantly different from those of other specialties.

The Oxford Textbook of Palliative Medicine [101] contains several chapters on pediatric palliative care, including pain control, symptom control, psychological adaptation, family adjustment and support, special services for children, the development of pediatric palliative care, and ethical frameworks. There are also several chapters devoted to education, including education of social workers, clergy, and volunteers. Principles and Prac tice of Supportive Oncology has a chapter on pediatric palliative care [102], and a new text devoted exclusively to pediatric palliative care is in preparation (B. Carter and M. Levetown, personal communication) with several chapters devoted to advocacy and education. The Textbook of Palliative Nursing [103] has two pediatric chapters, one on hospice care and one on inpatient and ICU (Intensive Care Unit) care. Palliative Medicine Secrets [104] has a pediatric chapter with basic information presented in a question and answer format. The Handbook of Psychiatry in Palliative Medicine [105] has two pediatric chapters, “Psychiatric Care of the Terminally Ill Child” and “Psychotherapy with the Dying Child”; bereavement care and other psychospiritual needs of children of dying cancer patients are briefly addressed in other chapters.

Several resources are available specific to pediatric palliative care. Examples include the Compendium of Pediatric Palliative Care from ChIPPS [106] and End-of-Life Care for Children published by the Texas Cancer Council [107], a concise and thorough review of essentials of pediatric palliative care including psychospiritual issues.

Published Curricula and Guidelines

Tools specifically designed to assess curricular content in palliative care are scant. Sellers [108] and Meekin [109] report on successful strategies for assessing curricular content, the latter with more attention to the “hidden curriculum” discussed above.

The Education of Physicians on End-of-Life Care Curriculum (EPEC), an initiative of the American Medical Association's Institute for Ethics (1999), is a physician-directed program developed “to provide education for physicians in the core competencies in end-of-life care.” [110] Some age-appropriate language is found throughout. It was designed as a “train-the-trainer” curriculum that trainees could adopt for their own organizational needs. VanGeest [111] demonstrated that EPEC was meeting the needs of physician educators in providing topics relevant to care of dying patients and that the curriculum by learner report would change practice behaviors. However, EPEC trainees did not feel sufficiently prepared to teach EPEC to others.

The Canadian Palliative Care Curriculum, published as Palliative Medicine: A Case-Based Manual [112]; the International Workgroup in Death, Dying and Bereavement [113]; the American Association for Cancer Education [114]; the National Consensus Conference on Medical Education for Care Near the End of Life [115]; and the European Association for Palliative Care [116] have minimal if any pediatric content.

The American Academy of Hospice and Palliative Medicine has produced a series of educational materials in EOL. A self-study program consisting of a series of monographs called UNIPAC is available. Each follows a self-instructional learning format with objectives, pre- and post-tests, reading material, and clinical scenarios requiring knowledge application. “UNIPAC Eight: The Hospice/Palliative Medicine Approach to Caring for Pediatric Patients” is in field-testing currently [117]. AAHPM has also produced other materials including the Palliative Care Pocket Consultant [118] and the Primer of Palliative Care [119]; neither has pediatric-specific content. The Hospice and Palliative Medicine Core Curriculum and Review Syllabus has a pediatric chapter [120].

The End-of-Life Nursing Education Consortium ( project has been developed to prepare nurse educators to provide end-of-life education for nursing students and practicing nurses together with resources to facilitate education, based upon the recommendations in “Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care” ( Pediatric content is integrated into the teaching modules, and a pediatric ELNEC curriculum is under construction (B. Ferrell, personal communication).


Requirements for licensing or certification of professionals and accreditation of programs from independent organizations were evaluated. The method of search was primarily Web based, but in some cases, telephone contact and/or personal interview with a representative member of the agency confirmed the information in question. The evaluation in this review included, when available, the agency's mission and position statements, curriculum outline, and/or certification criteria.

The accreditation and licensing or certifying requirements and/or curriculum were reviewed for the presence of palliative care content containing the following:

  • Death and dying
  • Death and dying in adults
  • Palliative care
  • Palliative care for children
  • End-of-life care
  • End-of-life care for children
  • Hospice care
  • Medical ethics
  • Goals of care
  • Communication (bad news)
  • Withholding and withdrawing treatment
  • Medical futility
  • Pain management
  • Symptom management
  • Psychosocial support
  • Grief and bereavement
  • Grief and bereavement in children
  • Child's concept of chronic illness
  • Child's concept of death
  • Child's emotional and cognitive development
  • Spirituality and religion
  • Spirituality and religion of children
  • Concept of care of chronically ill
  • Concept of family-oriented care
  • Concept of quality of life

Accreditation Standards: Allied Health Disciplines

Pastoral Care

National Association of Catholic Chaplains (NACC)

3501 South Lake Dr., P.O. Box 07473, Milwaukee, WI 53207;

(414) 483-4898;

NACC is an organization of Catholic priests, religious, permanent deacons and laity engaged in professional health care and related institutional ministries.

Association of Professional Chaplains (APC)

1701 East Woodfield Road, Suite 311, Schaumburg, IL 60172;

APC is an interfaith professional pastoral care association of providers of pastoral care endorsed by faith groups to serve persons in physical, spiritual, or mental need in diverse settings throughout the world. APC provides pastoral care through education, research, standards of care, certification, and support of members and promotes public support for skilled spiritual care.

American Association of Pastoral Counselors (AAPC)

9504 A Lee Highway, Fairfax, VA 22031;

(703) 385-6967;

AAPC is an international organization of ministers, priests, rabbis, and religious-oriented professionals. AAPC promotes the development of pastoral counseling ministry. It establishes standards and provides certification for competent practice and training of pastoral counselors and accreditation for pastoral counseling centers and training programs.

Association for Clinical Pastoral Education (ACPE)

1549 Clairmont Rd., Suite 103, Decatur, GA 30033;

(404) 320-1472;

ACPE is an interfaith organization that fosters training in pastoral care and counseling through clinical pastoral education (CPE). ACPE establishes CPE standards, accredits CPE centers, and certifies CPE supervisors.

Aspects of clinical pastoral education are consistent with a palliative care approach to patient care, including emphasis on relational skills; students' understanding of how their own attitudes, values and assumptions affect their clinical work; spiritual assessment, coping with suffering, grief, and loss; and interdisciplinary functioning. Pediatric exposure and expertise is dependent upon training sites. There is no unifying curriculum; individual pastoral organizations offer certification for their members.

Social Work

The Council on Social Work Education (CSWE)

1725 Duke Street, Suite 500, Alexandria, VA 22314-3457;

(703) 683-8080;

CSWE is a nonprofit national association representing more than 3,000 individual members as well as 158 graduate and 453 undergraduate programs of professional social work education. CSWE is recognized by the Council for Higher Education Accreditation as the sole accrediting agency for social work education in the United States.

American Board of Examiners in Clinical Social Work (ABECSW)

414 First Street East, Suite 3, Sonoma, CA 95476;

(888) 279-9378;

This organization sets national practice standards in clinical social work.

National Association of Social Workers (NASW)

750 First Street NE, Suite 700, Washington, DC 20002-4241;

(202) 408-8600;

NASW is a professional organization of social workers that establishes standards to define and describe professional practice. NASW has written a position paper on hospice, and also lists end-of-life care in several sections of its standards for social work in health care settings”

Clinical social workers have no requirements for structured training in pediatrics, palliative care and/or EOL care. Some schools have courses and/ or seminars regarding these topics. Many of the educational objectives of social work, however, are consistent with a palliative model of care, including understanding of the reciprocal relationships between human behavior and social environments, understanding the range of social systems in which people live and suffer and the ways social systems promote or deter people in maintaining or achieving health and well-being; identifying issues, problems, resources, and assets and planning for service delivery, and enhancement of communication skills.

Through the Project on Death in America/Open Society Institute Social Work Leadership Development Award Program (, several innovative educational programs in palliative and end-of-life social work education have been funded. Examples include a collaborative social work/clergy graduate curriculum (Katherine Walsh-Burke and John Linder,; a statewide social work curriculum project in West Virginia (Jim Keresztury and Doris Nicholas,; a social work textbook review and curriculum development project at University of Wisconsin, Madison (Betty Kramer and Lori Pacourek,; and a pilot curriculum from the Social Work End-of-Life Educational Program (SWEEP, Ellen Csikai, http://www/ A program directed by Barbara Jones at Albany Medical Center, specifically geared toward social work education for psychosocial providers for children with cancer, was also recently funded.

Child Life

Child Life Council (CLC) and the Child Life Certifying Committee (CLCC)

11820 Parklawn Drive, Suite 202, Rockville, MD 20852-2529;

(301) 881-7090;

The CLC is the professional organization for child-life specialists who use play, recreation, education, self-expression, and theories of child development to promote psychological well-being and optimum development of children, adolescents, and their families.

The educational background of child-life specialists is based primarily on the child and family needs with a focus on enhancing normal growth and development of infants, children, and youth. Child-life education recognizes the diversity of individuals' and families' strengths and needs and promotes individual and family integrity and well-being. Child-life embraces palliative care principles such as the concepts of family-centered care, relationship-based practice, and communication across settings. It also emphasizes application of child development theory and interdisciplinary professional collaboration. Students cover areas that include separation and loss, stress and coping, bereavement support, and interventions. Certification requirements, however, do not indicate specific training in the care of dying children and their families.


American Psychological Association (APA)

750 First Street NE, Washington, DC 20002-4242;

(202) 336-5979;

The APA is the accrediting body for educational programs in psychology. The Ad Hoc Committee on End-of-Life Issues of the APA issued a “Resolution on End-of Life Issues and Care” promoting end-of-life care research and training within psychology programs, supporting efforts to increase funding for EOL care research, and encouraging psychologists to obtain training in the area of ethics as it applies to end-of-life decisions. The APA advocates for access to hospice and professional mental health services for seriously ill individuals and their families (specific recommendations can be found at

Psychology education emphasizes clinical roles in assessment, intervention, advocacy, and interdisciplinary service delivery, all relevant to palliative care. Training stresses development of competence in evaluation of mood and anxiety disorders, pain, family and caregiver interactions, psychological and cognitive functioning, and existential concerns. There are no accredited postdoctoral residency training sites in palliative medicine or EOL care available for psychology doctoral graduates.

Grief and Bereavement Counseling and Therapy

There are currently no generally recognized national standards for training providers of grief and bereavement support services. Individual organizations, however, do offer training and accreditation, such as the American Academy of Bereavement (, the Dougy Center for Grieving Children (, and the American Academy of Grief Counseling ( The Association for Death Education and Counseling (ADEC; http:/ / offers the certification categories “certified grief therapist,” “certified grief counselor,” and “certified death educator.” The Bereavement Professionals Section of the National Hospice and Palliative Care Organization and National Council of Hospice and Palliative Professionals is preparing guidelines for publication entitled “Guidelines for Bereavement in Hospice” with specific recommendations for education and competency in this area (Barbara Bouton, Director of the Bridges Center, Louisville, Ky., personal communication, 12/08/01).

The Education Work Group of the International Work Group on Death, Dying and Bereavement published a statement of principles regarding education about bereavement [121]. Descriptions of the normal grief process are widely available (e.g., [122]). Principles relevant to the care of grieving children and their families have also been published [123, 124]. Several textbooks of bereavement and grief counseling do address pediatric issues [125127]. Descriptions of workshops and training programs are also available, but their impact on family bereavement is unknown [128, 129].

Accreditation Standards: Nursing

National Council of State Boards in Nursing (NCSBN)

676 North St. Clair Street, Suite 550, Chicago, IL 60611-2921;

(312) 787-6555;

The mission of the NCSBN is to lead in nursing regulation by assisting member boards, collectively and individually, to promote safe and effective nursing practice in the interest of protecting public health and welfare. NCBSN develops the NCLEX-RN and NCLEX-PN examinations, performs policy analysis, and promotes uniformity in relationship to the regulation of nursing practice, disseminates data related to the licensure of nurses, conducts research pertinent to NCSBN's purpose, and serves as a forum for information exchange for members.

National League of Nursing Accreditation Commission (NLNAC)

61 Broadway, 33rd Floor, New York, NY 10006;

Phone: 800-669-1656 or 212-363-5555; Fax: 212-812-0390

NLNAC is responsible for the specialized accreditation of nursing education schools and programs, both post-secondary and higher degrees (master's, baccalaureate, associate, diploma, and practical nursing program).

National Board for Certification of Hospice and Palliative Nurses (NBCHPN)

Penn Center West One, Suite 229, Pittsburgh, PA 15276;

(412) 787-9301;

Certification is a voluntary process through which the NBCHPN validates an individual registered nurse's qualifications and knowledge in the specialized area of hospice and palliative nursing practice. Candidates who successfully pass the certification examination for hospice and palliative nurses are eligible to use the registered designation CHPN (certified hospice and palliative nurse).

American Association of Collegiate Nursing (AACN)

One Dupont Circle, NW, Suite 530, Washington, DC 20036;

Phone: (202) 463-6930; Fax: (202) 785-8320

AACN is the national voice for America's baccalaureate- and higher-degree nursing education programs. AACN's educational, research, government advocacy, data collection, publications, and other programs work to establish quality standards for bachelor's and graduate degree nursing education, assist deans and directors to implement those standards, influence the nursing profession to improve health care, and promote public support of baccalaureate and graduate education, research, and practice in nursing. AACN found that although nursing was felt to be the leader and expert in end-of-life care, “after reviewing accreditation standards, licensure criteria, and curriculum content it became clear that end-of-life education and training is inconsistent at best and sometimes completely neglected within nursing curricula” (

National League for Nursing (NLN)

61 Broadway, New York, NY 10006;

Phone: (800) 669-1656; Fax: (212) 363-5555

The National League for Nursing advances quality nursing education that prepares the nursing work force to meet the needs of diverse populations in an ever-changing health care environment. NLN goals include nursing education, faculty development, education research, data collection, assessment, and evaluation.

Nursing programs are accredited by either the National League for Nursing Accrediting Commission (NLNAC) or the Commission on Collegiate Nursing Education (CCNE). NLNAC accredits all undergraduate and master's nursing programs, and CCNE accredits baccalaureate and graduate nursing programs.

Many basic nursing competencies are relevant to the practice of palliative care. Nursing programs emphasize scientific knowledge, characteristics of reasoning, ethical and clinical judgment, decisionmaking, and interpersonal and technological skills, all of which are integral to nurses' clinical expertise and roles. The opportunity to practice nursing in a variety of health care settings offers a unique ability for the nurse to practice direct comfort care in addition to coordination, management, and planning of patients' treatment with a focus on integrating care across multiple settings. In addition, nurses have a unique opportunity to help with the identification, formulation, and evaluation of possible solutions to a broad range of society's needs in relation to end-of-life care in the United States, that are problematic, uncommon, or complex. Nursing is focused on “integrating the influence of the human experience,” and communication is a core competency throughout all curricula. Nursing curriculum guidelines reviewed demonstrate a lack of pediatric palliative or EOL care-relevant content.

Accreditation Standards: Medical Disciplines

General and subspecialty pediatric residency education was reviewed; some residency requirements for adult specialties were examined for comparison. A detailed review of the accreditation standards and, when available, the content outline for certifying examinations for each specialty was performed for the following:

Subspecialties of pediatrics including:
child neurology
child and adolescent psychiatry
neonatal–perinatal medicine
pain management
critical care
emergency medicine
sports medicine
adolescent medicine
Neonatal–perinatal medicine
Pediatric hematology–oncology
Pediatreic pulmonology
Pediatric cardiology
Pediatric neurology
Pediatric surgery
Pediatric psychiatry
Family practice
Subspecialties of family practice

Program requirements for residency education in pediatrics and its subspecialties are notably deficient on issues related to the care of children suffering from chronic, life-threatening, and terminal illnesses. Palliative care, comfort care, end-of-life care, pain and symptom management, relevant end-of-life ethical issues, and interventions to improve quality of life are notably absent from most ACGME requirements. Skills required to provide “care” to children and their families at the end of life are not addressed. New core competencies outlined by ACGME and ABMS may facilitate the introduction of child-focused, family-oriented care aimed at the relief of suffering and achieving the best possible quality of life for sick children and their families.

Accreditation Council for Graduate Medical Education

Suite 2000, 515 North State Street, Chicago, IL 60610-4322;

Phone: (312) 464-4920;

ACGME is a private, professional organization responsible for the accreditation of nearly 7,800 residency education programs. ACGME accredits residency programs in 110 specialty and subspecialty areas of medicine, including all programs leading to primary board certification by the 24 member boards of the American Board of Medical Specialties, and completion of an ACGME-accredited residency program is a prerequisite for certification in a primary board. ACGME Residency Review Committees (RRCs) develop curricular guidelines for training programs. Specialty boards or subboards produce the content outline for the certifying examination.

Graduate medical education (GME) comprises the second phase of the formal educational process that prepares doctors for medical practice. GME is required for all medical school graduates to obtain licensure and board certification in a medical specialty or subspecialty. GME is conducted primarily in the clinical setting. Sponsors of GME programs (teaching hospitals, medical schools, regional consortia) have ultimate responsibility for the management and quality of all GME-related activities. Sponsors must comply with the institutional requirements promulgated by ACGME. These requirements are specialty specific and represent the medical profession's consensus as to the minimum levels of oversight and support required for GME programs to meet expectations.

Program Requirements for Residency Education in Pediatrics

End-of-life care skills of pediatricians are listed under the behavioral– developmental experience and include assessment of the impact of chronic diseases, terminal conditions, and death on patients and their families. The scope of training for pediatricians includes relevant areas such as medical ethics including confidentiality, consent, relationship to physicians and patients, “issues of life-sustaining treatments,” communication and interpersonal skills, emotional and cognitive stages of human development, psychosocial support of the seriously ill child, and interdisciplinary care

Absent are educational experiences related to quality of life, spiritual care of the dying child, the child's perception of illness or death, grief and bereavement, medical futility, pain and symptom management, assessment of goals of care, communication of bad news or advanced care planning, uniqueness of the child and family as a functional unit, and palliative care or hospice.

Program Requirements for Residency Education in the Subspecialties of Pediatrics

The curriculum includes developing the skills required for dealing with “complications of death” as a general statement for all pediatric subspecialty training. Specific palliative care competencies are addressed in some subspecialties:

  • Child neurology: “The resident must receive instruction in appropriate and compassionate methods of terminal palliative care, including adequate pain relief, and psychosocial support and counseling for patients and family members about these issues.”
  • Emergency medicine: “There must be an emphasis on developing a compassionate understanding of the stress associated with sudden illness, injury and death so that the resident may be responsive to the emotional needs of the patients, their families, and the staff of the emergency department. Discussion and appreciation of the many ethical issues involved in pediatric emergency medicine should be part of the educational program.”
  • Hematology–oncology: “The subspecialty resident should participate in the activities of the tumor board and in the provision of comprehensive care to the child with cancer and should have experience in support of the patient, family, and staff in dealing with terminal illness. Residents should be guided in the development of skills in communication and counseling, including the recognition and management of psychosocial problems in pediatric patients.”

Required training in palliative medicine, EOL care, and relevant end-of-life ethical issues is notably absent in other pediatric subspecialties with a high number of pediatric deaths such as pulmonology, critical care medicine and neonatal care.

Program Requirements for Residency Education in Family Practice

Family physicians are expected to assume responsibility for the total health care of the individual and the family, taking into account the “social behavioral, economic, cultural, and biologic dimensions.” Residents are also expected to have experience in all patient care contexts including outpatient, inpatient, home, and long-term care facilities but hospice care is not listed as a requirement. Experiences in the care of chronically ill patients are required. “End-of-life issues” and “coping with serious illness and loss” are required, but no specific requirements exist in palliative care. Ethics regarding end-of-life care are not addressed.

The subspecialty of family practice geriatric medicine includes many relevant content areas, including experience with home visits and hospice care including continuity of care with an assigned panel of home or hospice care patients as well as management of patients in long-term care settings, including palliative care, knowledge of the administration, regulation, and financing of long-term institutions, and the continuum from short- to long-term care.

The American Academy of Family Physicians (AAFP) position paper “End of Life Care” does not mention children (

Program Requirements for Residency Education in Psychiatry

ACGME requirements for psychiatry residents describe compassion and respect as a medical skill. The documents includes as part of the didactic curriculum the “biological, psychological, sociocultural, religious/spiritual and family factors that influence development throughout the life cycle” but death and dying, end-of-life care, and palliative care are not listed as specific requirements. Hospice care or exposure to patients at the end of their lives is not required for accreditation. Spirituality is mentioned in the context of the totality of the individual. The concept of chronic illness is mentioned in term of psychiatric conditions. The concept of quality of life is not documented.

The content outlines for the certifying examination by the American Board of Psychiatry and Neurology outline pain pathways, treatment of acute and chronic pain, and analgesics as elements of pain management. Death and dying are listed as topics of interest as is the concept of normal grief versus depression. Developmental milestones are also listed. Ethical issues at the end of life and spirituality are not listed in the content outline.

The subspecialty of pain management (psychiatry) lists relevant content areas including “principles and techniques of cancer pain management, including death and dying, and the ethical principles involved in hospital, hospice, and home care,” as well as “other services including vocational, nursing, pharmacy, dietary, pastoral care, end of life care, as well as liaison with hospice and abuse services.”

Program Requirements in Other Subspecialties

Anesthesiology pain management, a subspecialty of anesthesiology, and neurology pain management, a subspecialty of neurology, list similar content areas to pain management (psychiatry). General program requirements for residency education in neurology include “instruction in appropriate and compassionate methods of end-of-life palliative care, including adequate pain relief and psychosocial support and counseling for patients and family members about these issues.”

Obstetrics and gynecology requirements list “compassionate patient care” as one of the goals and emphasize “interpersonal and communication skills and adherence to ethical principles.” Palliative care or EOL care and pain management are not listed as requirements for certification.

For comparison, the program requirements for internal medicine include: end-of-life care, “instruction in the principles of palliative care for terminally ill patients, including the role of the health-care team,” and “it is desirable that residents participate in hospice and home care.”

Competency-Based Medical Education

The ACGME and ABMS have approved a new set of competencies for medical education in six areas. Programs must define the specific knowledge, skills, and attitudes required and provide educational experiences as needed in order for their residents to demonstrate such competencies:


patient care that is compassionate, appropriate, and effective for the treatment of health problems and the promotion of health;


medical knowledge about established and evolving biomedical, clinical, and cognate (e.g., epidemiological and social–behavioral) sciences and the application of this knowledge to practice-based patient care;


learning and improvement that involves investigation and evaluation of their own patient care, appraisal and assimilation of scientific evidence, and improvements in patient care;


interpersonal and communication skills that result in effective information exchange and teaming with patients, their families, and other health professionals;


professionalism, as manifested through a commitment to carrying out professional responsibilities, adherence to ethical principles, and sensitivity to a diverse patient population; and


systems-based practice, as manifested by actions that demonstrate an awareness of and responsiveness to the larger context and system of health care and the ability to effectively call on system resources to provide care that is of optimal value.

American Board of Medical Subspecialties

1007 Church Street, Suite 404, Evanston, IL 60201-5913;

(847) 491-9091;

Blueprints for subspecialty certifying examinations prepared by the American Board of Pediatrics (ABP) and its subboards were reviewed. None of the outlines listed the care of the dying child in terms of palliative care or end-of-life care. Death and dying was mentioned in hematology–oncology as “fatal illness.” In critical care medicine, the concept of death was listed as “determination of brain death” and “organ and tissue donations.” Death and dying was not mentioned in pulmonology, cardiology and neonatal– perinatal medicine. The most extensive list of issues related to death and dying in children was seen in behavioral and developmental pediatrics. Ethical issues appeared to be listed primarily in the critical care medicine outline, but the concept of withholding treatment is described as “withholding care.” Pain management and analgesics appear in the content outline of only critical medicine and hematology–oncology but non-pain symptom management is not addressed. None of the outlines reviewed except for behavioral–developmental pediatrics contained topics related to psychosocial support. None of the outlines list religion and spirituality.

Accreditation Standards: Undergraduate Medical Education

Requirements for undergraduate medical education lack standards regarding palliative and end-of-life care for children. Although LCME has a 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;

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;

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 “module 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, 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 [130], and the U.S. Department of Veterans Affairs has also established a six-center “Interprofessional Fellowship Program in Palliative Care” ( 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 [131], undergraduates [132, 133] and medical students [60, 134143].

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 [144].

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. [147] 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. [148] 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 [149].

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 ( 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.


The Faculty of Pharmacy and Pharmaceutical Sciences at the University of Alberta, Canada, has created an elective experience—the “Pain Module”—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 [150].


VandeKieft et al. [151] 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 ( 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 [152].


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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.

Copyright 2003 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK220803


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