CHAPTER 9
EDUCATING HEALTH CARE PROFESSIONALS

The medical student population is probably the one that on a daily basis, offends parents the most. . . . I have been vocal with residents, like this person needs 101 in how to work with a parent. . . . But there is no real formal process set up for that feedback.

Tina Heyl-Martineau, parent, 2001

Whether the issue is insensitivity to feelings and emotions, inattention to pain and other symptoms, or inadequate information, children and families suffer when they encounter pediatricians and other professionals who are ill-prepared to offer them competent, consistent, and compassionate palliative, end-of-life, and bereavement care. Although education alone cannot ensure such care, undergraduate, graduate, and continuing health professions education is necessary to provide an essential foundation of scientific knowledge, ethical understanding, and technical and interpersonal skills.

Even for medical conditions that are invariably or often fatal, the focus of classroom lectures, clinical rotations, and textbooks is almost exclusively on the pathophysiology of disease and the conventional or experimental interventions that might prolong life—often with little regard for the likelihood of success and with little attention to the burdens experienced by dying patients and their families. In one recent survey of pediatric oncologists, respondents reported that the most common way they learned about end-of-life care was “trial and error” (Hilden et al., 2001a). Although a substantial fraction of children diagnosed with cancer die, only 10 percent of the pediatric oncologists reported having taken a formal course



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CHAPTER 9 EDUCATING HEALTH CARE PROFESSIONALS The medical student population is probably the one that on a daily basis, offends parents the most. . . . I have been vocal with residents, like this person needs 101 in how to work with a parent. . . . But there is no real formal process set up for that feedback. Tina Heyl-Martineau, parent, 2001 Whether the issue is insensitivity to feelings and emotions, inattention to pain and other symptoms, or inadequate information, children and families suffer when they encounter pediatricians and other professionals who are ill-prepared to offer them competent, consistent, and compassionate palliative, end-of-life, and bereavement care. Although education alone cannot ensure such care, undergraduate, graduate, and continuing health professions education is necessary to provide an essential foundation of scientific knowledge, ethical understanding, and technical and interpersonal skills. Even for medical conditions that are invariably or often fatal, the focus of classroom lectures, clinical rotations, and textbooks is almost exclusively on the pathophysiology of disease and the conventional or experimental interventions that might prolong life—often with little regard for the likelihood of success and with little attention to the burdens experienced by dying patients and their families. In one recent survey of pediatric oncologists, respondents reported that the most common way they learned about end-of-life care was “trial and error” (Hilden et al., 2001a). Although a substantial fraction of children diagnosed with cancer die, only 10 percent of the pediatric oncologists reported having taken a formal course

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

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necessary element in a comprehensive strategy for improving palliative, end-of-life, and bereavement care as outlined elsewhere in this report. BASICS OF HEALTH PROFESSIONS EDUCATION FOR PEDIATRIC PALLIATIVE AND END-OF-LIFE CARE The committee believes that educational strategies to improve palliative and end-of-life care should begin with the early stages of a health professional’s education, intensify and gain focus during more specialized training, and then provide reinforcement and updating as needed throughout a professional’s career. At each stage, the aim should be, in individual terms, to produce the foundation of knowledge, skill, and attitudes appropriate to a professional’s or future professional’s role in the health care system and, in social terms, to generate a sufficient level and range of medical, nursing, and other expertise to meet diverse patient and family needs. Thus, educational strategies should include elements suitable for beginning students of medicine, nursing, social work, and other fields; medical residents in different specialties and fellows in different subspecialties; psychologists, social workers, and others in relevant graduate or advanced study programs; practicing generalist and specialist professionals in hospitals, hospices, and other settings; and paramedics, law enforcement personnel, staff of medical examiners’ offices, and others who respond to sudden or traumatic deaths or are involved with survivors of such deaths. In pediatric medicine, even though a general pediatrician will usually refer children with life-threatening medical problems to specialists, he or she may continue to care for the child, for example, after a disease-related treatment regimen concludes or after a child returns home following treatment at a distant center. He or she may also care for the child’s siblings and, generally, may be a trusted resource for a family even after a child has been referred or died. Undergraduate and graduate medical education should prepare general pediatricians for these roles. Clinicians who specialize in pediatric critical care or oncology should be more intensively prepared for their extensive involvement with seriously ill or injured children and their families. Because the number of child deaths is very small compared to the number of adult deaths, attention to end-of-life issues in pediatric education may seem peripheral to some, especially given the competition for time

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in the medical curriculum. This committee acknowledges the pressures on educators to add a long list of new topics—ranging from attention-deficit and hyperactivity disorder to the ethics of genetic screening—to an already crowded curriculum. It believes, however, that strengthening education in end-of-life care will not impose an undue burden. As argued by an earlier group (IOM, 1997, p. 212): First, palliative care is not a special interest issue; its principles of whole-patient care and teamwork provide a model for many other areas. Second, curriculum change need not be just an expensive addition but can also be an enrichment of established educational content and formats. Third, the use of existing program models and sharing of information can reduce the curriculum development burden on any single school. Fourth, the need to look beyond the hospital setting for educational opportunities is not unique to end-of-life care, but can be considered as part of a more general effort to develop non-hospital arrangements for improved training in primary care, chronic care, and outpatient care. Moreover, many of the concepts, principles, and research findings that guide education for professionals who care for adults are broadly relevant to the education of those who care for children and their families. Some adaptations in educational goals and content will, however, be necessary to reflect the special needs of infants, children, and adolescents with life-threatening illnesses. For example, education in pain assessment, prevention, and management will have to consider the particular challenges of assessing symptoms in infants and preverbal children and in prescribing analgesic medications given the frequent lack of research-based information on doses for children at different developmental stages. The development of a group of specialists in pediatric palliative care clearly has begun, often with support from the larger group of palliative care specialists who focus on adult care. These pediatric palliative care specialists are already helping to focus the attention of other clinicians, educators, professional societies, research funders, managers, and policymakers on strengthening educational and organizational resources for pediatric palliative care and enlarging the scientific foundation for that care. Consistent with the 1997 IOM report, this committee strongly supports the continued evolution of palliative care “as a defined and accepted area of teaching, research, and patient care expertise” (IOM, 1997, p.227). At any level, professional competence has intellectual, interpersonal, and moral elements (Papadatou, 1997; Epstein and Hundert, 2002). It evolves as a professional accumulates training and experience and develops the capacity to integrate knowledge and awareness gained in varied clinical, organizational, and social contexts. Box 9.1 lists a set of basic competencies in four areas: (1) scientific and clinical knowledge; (2) interpersonal and other skills; (3) ethical and professional principles of care; and (4) organiza-

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BOX 9.1 Preparing Health Care Professionals to Provide Palliative, End-of-Life, and Bereavement Care to Children and Families Scientific and clinical knowledge and skills, including the following: Learning the biological mechanisms of end-stage medical conditions as manifested in infants, children, and adolescents Understanding the pathophysiology of pain and other physical and emotional symptoms as it interacts with children’s physiologic development and medical condition Developing appropriate expertise and skill in the pharmacology of symptom management in children, taking advantage of advances in pediatric drug research and labeling Acquiring appropriate knowledge and skill in nonpharmacological symptom management, including complementary and alternative medicine and behavioral strategies Understanding the tools for assessing patient symptoms, status, quality of life, and prognosis that have been developed or adapted for children at different developmental stages Recognizing when consultation with palliative care specialists is appropriate Understanding the epidemiology of death in childhood Learning clinical indications for and limits of life-sustaining treatments Interpersonal skills and attitudes, including the following: Listening to child patients, families, and other members of the health care team Conveying difficult news to children and their families Providing clear, timely, relevant information and guidance on prognosis and options Understanding and managing child and family responses to a child’s life-threatening illness, including anticipatory grief and bereavement Sharing goal setting and decisionmaking with the care team, including family members tional skills to help patients and families navigate the health care system. In general, the list is oriented toward pediatricians as those most broadly accountable for patient and family care. Given the range of professionals involved and skills needed, no single set of competencies in pediatric palliative and end-of-life care can comprehend all relevant issues. Beyond the basics, education must prepare clinicians who specialize in care for children with life-threatening medical problems for the special clinical, psychological, and other challenges of such care. These challenges, in particular, include the risk of “burnout” and other emotional problems

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Developing skills in avoiding and resolving conflicts involving patients, family members, and other members of the health care team Cultivating empathy, compassion, humility, and altruism Developing sensitivity to religious, cultural, and other differences among children and families and among professionals and relevant others Recognizing and understanding one’s own feelings and anxieties about the death of a child Ethical and professional principles, including the following: Acting as a role model of clinical proficiency, integrity, and compassion Determining and respecting child and family preferences, taking into account children’s stage of development and legal requirements Learning principles of pediatric palliative and end-of-life care, including advance care planning Understanding societal and population interests and resources Balancing competing objectives or principles Being alert to personal and organizational conflicts of interests Organizational knowledge and skills, including the following: Developing and sustaining effective professional teamwork Identifying and mobilizing supportive resources (e.g., hospice, school, and other community-based assistance), including resources for children with special health care needs Understanding and managing relevant rules and procedures set by health care organizations, insurers, and government units (e.g., medical examiner’s office, social welfare agencies) Protecting children and their families from harmful rules and procedures Assessing and managing care options, settings, and transitions Making effective use of existing financial resources and cultivating new funding sources SOURCE: Adapted from IOM, 1997, with additional information from Appendix G. that may arise after intensive, day-to-day care of children who die and their families. Hospices, in particular, have recognized the need for strategies to help professionals cope with the stresses of end-of-life care (see, e.g., Harper, 1977, 1993; Dean, 1998; Sumner, 2001). Some of their strategies focus on organizational policies and environments (e.g., assigning shared responsibility for care, ensuring emotional support and empathy from administrative staff and coworkers). Other strategies emphasize coping mechanisms as part of initial training and continuing education programs.

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CURRENT STATUS OF PROFESSIONAL PREPARATION IN PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES Despite an increasing list of educational programs that incorporate or focus on palliative and end-of-life care, surveys and other assessments continue to reveal shortfalls in the preparation of health professionals to care for adults and children who die and their families. These shortfalls characterize undergraduate, graduate, and continuing education. Most assessments have focused on physician education, but nursing and social work education appears to show a similar pattern of inattention. The major—and not unexpected—exception to the pattern of inattention involves on-the-job and continuing education for the many different professionals who provide hospice care. Hospices also offer training both for volunteers and for family members who provide physical care to dying loved ones. Undergraduate Medical Education After discussing this . . . [the attending physician] casually told the intern and myself to tell the patient she had end-stage cancer, that we would be doing tests to find the source, and that was all we could do for her. I could not believe it. Finally I understood the difference between knowing and understanding. Fourth-year medical student (Wear, 2002, p. 272) This period in the education of physicians involves profound processes of professional socialization that affect attitudes and practices throughout their professional life. By the time medical students end their fourth year, they will have been directly involved with hospitalized patients, typically with little preparation for the interpersonal aspects of caring for gravely ill individuals and their families. One educator’s survey of fourth-year medical students suggested that students sometimes became involved with dying patients as a result of an attending or resident physician’s discomfort or lack of concern. The disbelieving student quoted above offered one example of such involvement. Another student reported that he felt his inept and unguided effort to discuss a patient’s preferences for resuscitation “doomed” the patient to a terrible, prolonged death. Although students knew that textbooks and lectures could not substitute for direct involvement with real patients, this kind of “sink-or-swim” experience was deeply troubling and not constructive (Wear, 2002). The discussion below has to be understood in this context. (For other personal accounts, see the physi-

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cian narratives published by the American Board of Internal Medicine [ABIM, 1996b].) One review of the literature on training for end-of-life care in medical education from 1980 to 1995 concluded that even though most medical schools appeared to include some formal instruction in the topic, “there is considerable evidence that current training is inadequate, most strikingly in the clinical years” (Billings and Block, 1997; see also Barnard et al., 1999). Several subsequent surveys have documented continued deficiencies in medical school and residency programs. For example, results from the 1997–1998 survey of medical schools by the Liaison Committee on Medical Education (LCME) indicated that one-third of the schools reported no required instruction in at least one of three key topics (death and dying, pain management, palliative care), and half offered no elective courses related to end-of-life issues (Barzansky et al., 1999).1 Most schools reported that they covered these issues in their basic curriculum. Only 4 of 125 medical schools reported that a course in death and dying was required. The next LCME survey (1998–1999) indicated that one-fifth of medical schools required no experience in home hospice or inpatient palliative care, and one-fifth did not even provide the opportunity for such experience on an elective basis (Barzansky et al., 1999). In principle, students could seek some experience through volunteer activities, for example, with children’s hospitals, hospices, or camps for children with advanced illness, but only the most aware and dedicated are likely to do so. Another challenge in medical education is that students in their last undergraduate year often are already thinking about specialization. The LCME surveys give only the most general picture of medical school instruction in end-of-life care. Coverage of end-of-life issues in the basic curriculum might involve no more than a single lecture or a set of readings. The lecture or readings might or might not reflect the clinical, professional, and other principles of palliative and end-of-life care endorsed in this and similar reports. As discussed further below, many opportunities exist to use end-of-life care or questions to illustrate more general themes related to compassion, humanism, ethics, patient- and family-centered care, behavioral interventions, and many other topics. Such an effort to diffuse palliative and end-of-life topics more broadly in the curriculum would, however, take creativity and persistence. 1   The LCME, which is supported by the American Medical Association and the American Association of Medical Colleges, accredits medical schools.

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Graduate Medical Education Results from the American Medical Association’s (AMA’s) 1997–1998 survey of residency programs showed considerable variability in their attention to end-of-life issues, not unexpected given the difference in clinical focus of various specialties (Barzansky et al., 1999). Almost all critical care residency programs reported some kind of structured curriculum in end-of-life care as did more than 90 percent of programs in family practice and internal medicine. Percentages were lower—between 60 and 70 percent— for programs in pediatrics, obstetrics–gynecology, psychiatry, and surgery. A more recent review by Weissman and Block (2002) reported that most surgical residency requirements were limited to ethics. For the 46 specialties reviewed, the most common requirements related to ethics (25 specialties) and psychosocial care (22). Only five mentioned clinical experiences. In Appendix G, Himelstein and Kane report on a recent survey of pediatric residency program directors and pediatric residents in training. In contrast to the routine annual surveys by the LCME and AMA, this survey generated a low response rate from program directors (22 percent) and residents (42 percent), so the results may not be generalizable. Although 62 percent of respondents reported that their residents were involved in end-of-life situations, only 42 percent indicated that their residents received direct education in palliative care. Only one program director reported that hospice care was a scheduled resident rotation, and one-quarter of respondents thought that their program included no experts in palliative care. Virtually all responding residents in training indicated that they had been involved in end-of-life care for at least one child, and 86 percent said that they had been actively involved. Active involvement by a resident does not necessarily mean that his or her performance was guided or assessed. An earlier survey of medical residents found that one-third said that they had never been observed in a discussion with a patient about a do-not-resuscitate (DNR) order and most had only been observed once or twice (Tulsky et al., 1996). As noted elsewhere, arranging clinical experiences involves a number of challenges (IOM, 1997). One is to provide adequate oversight, guidance, and feedback and thereby limit experiences that are little more than unstructured observation of clinicians and unguided interactions with patients. Maintaining such oversight and guidance is especially difficult as clinical experiences increase and trainees move into the community. Nursing, Social Work, and Other Professionals The committee located no detailed assessment of the inclusion of palliative care or end-of-life content in nursing, social work, or other health

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professions curricula. The American Association for Collegiate Nursing has concluded that “end-of-life education and training is inconsistent at best and sometimes completely neglected within nursing curricula” (AACN, 1998). The American Psychological Association similarly concluded that no systematic efforts have been undertaken to educate psychologists about end-of-life issues. The organization now encourages psychologists to obtain training in ethics as applied to end-of-life decisions and care and endorses “psychologists’ acquisition of competencies with respect to end-of-life issues, including mastery of the literature on dying and death and sensitivity to diversity dimensions that affect end-of-life experiences” (APA, 2001a, no page). Based on their review of program requirements, Himelstein and Kane (Appendix G) identified no structured training in palliative care or end-of-life care for clinical social workers. In general, however, educational requirements for social work are supportive of the approach to palliative and end-of-life care presented in this report. With private foundation funding, several social work educators are developing educational materials and programs to strengthen social workers’ formal preparation to support people who are dying and to assist their families (PDIA, 2001a,b). Various groups, including individual religious organizations, set standards for ministers, priests, rabbis, and others involved in pastoral care. As generally described in Appendix G, these requirements focus on knowledge, attitudes, and behaviors that are consistent with the principles of palliative care, but the committee located no formal assessments of these requirements, their implementation, or their effectiveness. Professionals with varied backgrounds provide bereavement care, and the field is still evolving. Several organizations offer training and certification, but as yet, no generally accepted national standards for training exist. The National Hospice and Palliative Care Organization (specifically, its section for bereavement professionals) is collaborating with the National Council of Hospice and Palliative Professionals to develop guidelines for hospice bereavement care. The guidelines are expected to discuss, among other topics, education for bereavement care providers (Personal communication cited in Appendix G from Barbara Bouton, Bridges Center, Louisville, Kentucky). In addition to training their own new and established staff, many hospices have education programs for community health care providers. Some hospices offer rotations or other experiences for medical students and other health professionals in training. For example, in a recent survey of approximately 4,000 hospices, about 10 percent reported training for pharmacists, who can be a valuable resource for professionals treating adults and children with symptoms of advanced disease (Herndon et al., 2001).

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Appendix G lists the organizations responsible for setting accreditation, licensure, and similar standards for other professionals including social workers, child-life specialists, and clergy. It also reports what the authors found on organizational Web sites and through personal conversations regarding inclusion of material about palliative and end-of-life care, including care for children. For the most part, coverage was slight to nonexistent. An in-depth survey might uncover more, but the committee suspects that the basic conclusion would be the same: most educational programs and resources ignore the end of life. Health Professions Textbooks Medical textbooks have traditionally paid little attention to the description or management of either the end stages of diseases such as cancer and heart disease or the symptoms and distress commonly experienced by gravely ill or dying patients. One study of four widely used general medical textbooks concluded that they had little that was helpful to say about end-of-life care and that discussions of specific diseases usually dealt with “only prognostication and medical treatments to alter the course of the disease” (Carron et al., 1999, p. 82). A more comprehensive review of 50 medical textbooks likewise concluded that top-selling medical specialty textbooks “generally offered little helpful information on caring for patients at the end of life” and that discussions of specific disease had “no or minimal end-of-life care content” (Rabow et al., 2000, p. 771). A separate investigation of four leading surgical textbooks concluded that “disease epidemiology, prognosis/prevention, progression, and medical interventions were generally well discussed in all textbooks . . . [but] little helpful information was provided [about] breaking bad news/advanced care planning, mode of death, treatment decision-making, effect on family/surgeon, and symptom management” (Easson et al., 2001. p.34). A similar analysis of the content of 50 leading nursing textbooks found that pain was the most commonly discussed topic related to end-of-life care, but such discussion comprised less than one-half of 1 percent of the text content (counted by pages) (Ferrell et al., 2000). The reviewers also found that the discussion of pain was often deficient in scope and sometimes inaccurate. A similar survey of social work textbooks is planned (PDIA, 2001a,b). The committee found no similar, systematic assessments of pediatric textbooks. However, editors of one text have begun to include more information on end-of-life issues and palliative care (Behrman et al., 2000). Still, in this and other texts, the sections on many conditions that are usually or often fatal include little or no discussion of the end stage of the disease or

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attention (directly or by cross-reference) to the care of dying patients and their families. INITIATIVES TO IMPROVE EDUCATION FOR PEDIATRIC PALLIATIVE AND END-OF-LIFE CARE General Changing health professions education is not easy. Deans of health professional schools, department chairs, residency program directors, certification and accreditation bodies, textbook authors, and other leaders face an avalanche of demands for new topics or perspectives to be included in curricula, residency program requirements, and other elements of health professions education. Academic medical centers and medical, nursing, and other health professions schools or programs also face financial pressures, particularly when state governments are trimming health and education budgets. Change often requires a years-long process of developing, reviewing, ratifying, and implementing new educational requirements or methods. For example, a change in residency requirements usually involves years of preparation, discussion, negotiation, and review before adoption, which is then followed by more time to allow implementation before programs are assessed for compliance. Changing course offerings and requirements in a medical or nursing school, particularly adding a requirement, is often a highly political process as different disciplines compete for priority in an already overloaded curriculum. Thus, those promoting educational reforms may also pursue less formal strategies such as persuading individual instructors to include palliative care issues as illustrations in existing courses. Efforts to improve the education of health professionals in palliative and end-of-life care can take several forms. They can include actions to improve curricula, clinical experiences, or resources (e.g., faculty preparation) for single educational institutions or programs or for consortia of institutions; set curriculum or other standards for a category of educational institutions, programs, or professionals; develop faculty expertise and other educational resources, including textbooks and Internet sites; and expand educational opportunities available to practicing professionals. Some initiatives focus on the development of materials or models that have general application across institutions, for example, standards for

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educational programs or requirements for licensure. The Robert Wood Johnson Foundation has supported work by the National Board of Medical Examiners (which administers the physician licensing examination that is an element in state licensure requirements) to develop examination questions on end-of-life care (RWJF, 2001). Coverage of palliative care and end-of-life issues in licensure examinations is intended to reinforce curriculum standards. The Residency Review Committee for Pediatrics, a subcommittee of the Accreditation Council for Graduate Medical Education, establishes requirements for the more than 200 pediatric residency programs. Box 9.2 lists requirements that specifically mention terminal conditions, death, some aspect of symptom management, or decisions about life-sustaining medical interventions. Other, generally relevant requirements include those relating to communication and interpersonal skills, team care for chronic or complex conditions, cultural dimensions of care, and quality assessment and improvement. The list mentions pain management but not quality of life or the symptoms other than pain that are common consequences of many life-threatening medical conditions or their treatment. Recently, some pediatric subspecialties—emergency medicine, hematology–oncology, and neurology—have added provisions related to palliative or end-of-life care (also shown in Box 9.2). The specifics vary. Although subspecialty programs are supposed to cover skills related to “complications of death,” residency requirements for some subspecialties that care for significant numbers of children who die—notably neonatalogy, pediatric critical care, and pediatric pulmonary medicine—are silent on palliative and end-of-life care. Requirements for family medicine are also relevant. They refer to integration of “end-of-life issues” into the educational experience (ACGME, 2000). Some states have acted to encourage attention to end-of-life issues in health professions education. For example, California added training in end-of-life care and pain management to the requirements for candidates for medical licensure, effective June 1, 2000 (Medical Board of California, 2000). In New York, a voluntary statewide effort is attempting to improve coverage of palliative and end-of-life care in the medical curriculum. One element of that effort has been the development of the Palliative Care Assessment Tool, which is intended to help medical schools in New York state assess and strengthen their curricula (Abele Meekin et al., 2000). The creation of such general standards for education programs can provide a broad stimulus for change. Nonetheless, support for education in palliative and end-of-life care still has to be mobilized on an institution-by-institution or organization-by-organization basis.

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Educational Strategies and Tools to Improve Palliative, End-of-Life, and Bereavement Care Integration and Illustration Ethics courses or course segments offer many opportunities for adult or pediatric end-of-life issues to be raised, for example, informed consent, double-effect decisionmaking, rationing, and truth telling. The humanities, which have become a more visible element of health professions education in recent years (see, e.g., Charon et al., 1995; Charon, 2001; Skelton et al., 2001), likewise provide rich opportunities to consider the human meaning of serious illness, suffering, and death. Competence in palliative and end-of-life care cannot, however, be achieved if these topics are isolated in ethics and humanities seminars. Scientific education and clinical training are also necessary in many areas. These include understanding the pathophysiology and natural history of life-threatening medical conditions; determining diagnosis and prognosis; assessing, preventing, and managing physical and mental symptoms of advanced disease; evaluating the potential benefits and burdens of pharmacological, behavioral, and other treatment options; and understanding how children’s developmental stage may affect pathophysiology, diagnosis, prognosis, symptoms, and treatments. More generally, a basic principle of education is repetition and reinforcement of—not one-time exposure to—important concepts. To use an analogy, “You give the immunization in the first year of medical school, but then you’ve got to boost them at two, and then you’ve got to boost them again at four and at six.” To this end, many opportunities exist to use palliative care and end-of-life issues as powerful illustrations in teaching other concepts, principles, and techniques during the didactic and clinical components of undergraduate medical education and the similar stages of nursing and other health professions education. One advantage of an “illustrative” strategy is that it is less threatening to established interests than changes in requirements. Also, educators are often interested in finding compelling and challenging examples and teaching materials for lectures, small-group discussions, and other experiences. For resident physicians, end-of-life issues can be considered in mortality and morbidity conferences and similar sessions based on the circumstances of actual patients. With educational materials increasingly available through the Internet, the traditional content constraints related to textbook selection and library resources are less of an impediment to curricular enrichment than in the past.

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BOX 9.2 Program Requirements for Residency Education Common Residency Program Requirements (February 2002) Programs must prepare residents to demonstrate competence in six areas: 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 patient care; Practice-based 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 collaboration 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. Pediatric Residency Program Requirements That Mention Death, Terminal Conditions, or Palliative Care (September 2000) Programs must provide instruction that enables residents to develop skills related to Impact of chronic diseases, terminal conditions, and death on patients and their families (behavioral developmental pediatrics); Pain management (procedural skills); and Relationship of the physician to patients, e.g., initiating and discontinuing the treatment relationship, confidentiality, consent, and issues of life-sustaining treatments (additional curricular requirements, medical ethics). Techniques and Tools Beyond lectures, an array of education techniques and tools exists to help health professionals develop competence in clinical care, including its psychosocial, ethical, and cultural dimensions. Common goals include improving patient–physician communication, encouraging teamwork among health professionals, and extending students’ experiences into physician office, nursing home, home, and other community settings. Many tools and

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Residency Program Requirements for Subspecialties of Pediatrics: General (July 2000) This curriculum should include the pathophysiology of disease, reviews of recent advances in clinical medicine and biomedical research, conferences dealing with complications and death, as well as instruction in the scientific, ethical, and legal implications of confidentiality and of informed consent (education program, curriculum). Residency Program Requirements for Child Neurology (February 1999) 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 (education program, clinical teaching). Residency Program Requirements for Pediatric Emergency Medicine (June 1998) 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 (curriculum). Residency Program Requirements for Pediatric Hematology–Oncology (September 1999) 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 (education program, clinical experience). SOURCE: Accreditation Council on Graduate Medical Education (http://www.acgme.org). techniques have the additional goals of improving the effectiveness of education by engaging students more directly in the learning process, strengthening problem-solving and reasoning skills, increasing the connections between scientific knowledge and clinical practice, and better preparing students for lifelong learning. Evaluations of the strategies summarized here and in Appendix G, while often promising, are limited, especially in the area of palliative care.

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Much is undertaken on the basis of experience and logic. Chapter 10 discusses directions for research to build the knowledge base for effective education in pediatric palliative care. Patients and Families as Teachers A social worker raised the astounding idea that instead of using actors or social workers, why not have standardized parents be actual parents, who went through the same training about giving feedback [to residents]? Deborah Dokken, parent, 2001 At the Lucile Packard Children’s Hospital, a six-session seminar in pediatric palliative care for first-year pediatric residents began in July 2001. The seminar runs continuously with the goal of having every resident rotate through and complete the course. During one of the six sessions, volunteer parents who have lost a child talk to the group about their experiences. As one family participant attested: “Now there is some emotion. There is a face. I think they realize their actions stay with these people for their lifetime” (Conlon, G., 2001). In a mentor session, a senior faculty member discusses with the group his or her experience working with children who die and their families. In other sessions, residents discuss their own professional and personal experiences with death and learn about symptom management, spiritual and cross-cultural aspects of care, and practical issues such as death certificates and coroner notification. (The needs assessment undertaken as part of the development of this course is described in Contro et al., 2002.) One frequently cited effort to strengthen the medical school curriculum is Harvard University Medical School’s elective course in “Living with Life-Threatening Illness” (Billings and Block, 1997; Block and Billings, 1998).2 The approach is to pair students with volunteer patients (sometimes including children) who have a life-threatening medical problem and then use that ongoing relationship as the focus of the course’s examination of issues in palliative and end-of-life care. A video and educational guide developed by the Education Development Center, which examines the experiences of students enrolled in the class over a two-year period, is part of an effort to encourage other schools to develop similar programs (Romer and Solomon, 2000). Earlier, Mermann and colleagues (1991) pioneered a similar course at Yale, but that course is no longer taught. 2   A range of materials was developed in support of this course by its faculty (Billings and Block, 1997).

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Simulated or Standardized Patients or ParentsSimulated patients are a well-accepted educational and assessment tool. Recently, the Federation of State Medical Boards and the National Board of Medical Examiners, which jointly administer the national licensing examination for physicians, announced that a clinical skills examination including standardized patients would be added to the examination (FSMB, 2002). Use of standardized patients is more challenging in pediatric than in adult settings. Lane and colleagues, however, describe the use of child standardized patients in an evaluation of a pediatric clinical skills assessment tool and reported that their use proved feasible for the evaluators, enjoyable for the children, and acceptable to the children’s real and standardized parents (Lane et al., 1999). Educators might, however, be hesitant to use child actors or volunteers to portray gravely ill or dying children. If their use was part of research to evaluate the strategy, an institutional review board, which must approve most human research, might object. Use of standardized family members presents fewer complications (see generally Clay et al., 2000). In a project exploring ways to increase organ donation, Williams and colleagues have studied the standardized families, in this case, people trained to behave as family members being confronted with bad news, decisions about end-of-life care, and requests for organ donation (Williams et al., 2001b; 2002). These sessions were intended to improve the communication skills of physicians, nurses, clergy, and transplant coordinators participating as a team The standardized families did not operate from explicit scripts and the sessions could be interrupted to discuss and even restart “problem” conversations. The families, trainers, and other participants provided feedback. The rate of consent to organ donation requests rose from 25 percent before to 75 percent after the intervention but then fell back with staff turnover (Personal communication, Michael Williams, M.D., Johns Hopkins Medical Institutions, March 11, 2002). The researchers are still preparing their final report and are seeking another grant to study the strategy in two to four community hospitals. In another project, researchers at George Washington University videotaped and evaluated skills of pediatric residents and emergency department fellows in communicating news of a child’s death to standardized parents and then provided feedback to the residents and fellows (Greenberg et al., 1999). During a similar exercise several weeks later, the researchers found improvements in information and counseling skills. Hospice and Inpatient Palliative Care ExperiencesAs noted earlier, some hospices offer educational programs not only to their own staffs and volunteers but also to health professions students and community providers. Gomez (1996) described one inpatient hospice program that was linked to

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a community-based home hospice program. It offered educational experiences for residents, medical students, and nurses. As described above, a survey of directors of pediatric residency programs suggests that such experiences are rare, even for clinicians who routinely care for children who die. Mentors and Role ModelsOne objective of developing a cadre of palliative care specialists is to provide established clinicians and clinicians-in-training with role models and mentors. Mentoring implies a more directed effort to teach and counsel a particular individual rather than to teach by example in group situations such as clinical rounds for medical residents and other trainees. Examples of mentoring strategies (as part of broader educational programs) include matching medical students with community-based physicians known for their attention to spiritual issues in practice and matching first- and third-year medical students to work with chaplain mentors in sessions with patients.3 In a controlled trial of an ethics education program, Sulmasy and colleagues (1995) compared groups of house officers, one that received lectures and another that received a more extensive intervention that included a physician ethicist as role model who participated in clinical rounds where he raised ethical questions about patients’ care. The trial also included two control groups. Those in the extensive intervention group showed more confidence on procedural issues and noted more concurrent care concerns (e.g., pain management) associated with DNR orders. Faculty Development Among other goals, a broad initiative to improve end-of-life care in Department of Veterans Affairs (VA) hospitals has aimed to increase the number of “faculty leaders and innovators” in the field and to develop curricula for the VA’s internal medicine residency programs (http://www.va.gov/oaa/flp/docFLPFactSheet.asp). The VA does not care for children and no equivalent care system exists for children. Nonetheless, this initiative has an evaluation component that may generate lessons useful for other faculty development efforts. Projects at Harvard and Stanford also aim at faculty development. In addition to covering palliative care principles and practice, Harvard’s program for nursing and medical educators (Harvard Medical School, 2002, http://www.hms.harvard.edu/cdi/pallcare/program.html) examines oppor- 3   These examples are included in short descriptions of programs that received awards for education in spirituality and medicine from the George Washington Institute for Spirituality and Health, George Washington University Medical School (http://www.gwish.org/courses/id44.htm). Systematic evaluations of program effects were not described.

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tunities and challenges in palliative care education and program development. A one-month program at Stanford aims to provide participants “with background knowledge and seminar leadership skills required to deliver a series of eight 2-hour seminars to their colleagues and to residents at their home institutions” (Stanford Faculty Development Center, 2002, http://www.stanford.edu/group/SFDP/progeol.html). Again, these programs focus on adult care. Continuing EducationOther important initiatives focus on continuing education for physicians and nurses. The Education for Physicians on End-of-Life Care (EPEC) Project (with leadership from the American Medical Association’s Institute for Ethics) has developed an education package that includes a mix of didactic sessions, videotape presentations, interactive discussions, and practical exercises (Emanuel et al., 1999). The Decisions Near the End of Life program, which has been used by interdisciplinary leadership teams in more than 230 institutions, includes a series of case-based seminars on ethical issues in end-of-life care (Solomon et al., 1997). Neither of these initiatives focuses on care for children and their families but both recognize the need for age-appropriate care. Both also have a “train-the-trainer” strategy with the objective of more broadly disseminating the resources for education in end-of-life care. The EPEC trainer’s guide includes a module on the evaluation of training sessions. A similar initiative for nurses is the End-of-Life Nursing Education Consortium (ELNEC), a partnership of the American Association of Colleges of Nursing and the City of Hope National Medical Center. The initiative focuses specifically on preparing nurse educators to bring education in end-of-life care to nursing schools and continuing education programs in a variety of settings (AACN, 2002). A pediatric version of ELNEC has been pilot tested (Personal communication, Betty Ferrell, Ph.D., City of Hope Medical Center, July 8, 2002). Other pediatric materials are being developed as part of Initiative for Pediatric Palliative Care described in Chapter 1. As noted in the introduction to this chapter, major textbooks on palliative medicine, nursing, and psychiatry now include chapters on pediatrics, and a self-study program on pediatric palliative care and other education materials should be available soon. In addition to these resources, other resources include several books and similar materials that discuss concepts, principles, and practical aspects of palliative and end-of-life care for children and their families (see, e.g., Goldman, 1999, ChIPPS, 2001; Armstrong-Dailey and Zarbock, 2001).

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DIRECTIONS FOR EDUCATORS The goal of professional education in palliative, end-of-life, and bereavement care is to build the competence of physicians, nurses, and others who care for people with fatal or potentially fatal medical conditions. Education cannot, however, ensure competent practice. As discussed throughout this report, that requires organizational environments, professional culture, financing policies, and laws and regulations that reward—or at least do not discourage—such practice. Nonetheless, undergraduate, graduate, and continuing health professions education must provide the basic knowledge, skills, and attitudes required for competent practice. Effective and compassionate care for children with life-threatening medical problems and their families will typically involve a range of health professionals as described in Chapter 5. Thus, education strategies must not only be appropriate to each profession’s role but also prepare professionals to work effectively in teams. Further, although educational programs will typically focus on pediatricians and other child health specialists, training is also important for others (e.g., emergency first responders) who are commonly involved in the care of children with life-threatening medical problems or have contacts with family members (e.g., police officers investigating an infant death at home). Recommendation: Medical, nursing, and other health professions schools or programs should collaborate with professional societies to improve the care provided to seriously ill and injured children by creating and testing curricula and experiences that prepare all health care professionals who work with children and families to have relevant basic competence in palliative, end-of-life, and bereavement care; prepare specialists, subspecialists, and others who routinely care for children with life-threatening conditions to have advanced competence in the technical and psychosocial aspects of palliative, end-of-life, and bereavement care in their respective fields; and prepare a group of pediatric palliative care specialists to take lead responsibility for acting as clinical role models, educating other professionals, and conducting research that extends the knowledge base for palliative, end-of-life, and bereavement care. Many efforts to improve care for adults and children who die emphasize communication, ethical concerns, and similar issues. The studies reviewed earlier in this report underscore that education in palliative and end-of-life care must also respond to deficiencies in symptom management and other clinical care that permit needless suffering at the end of life. Overall,

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educators, like clinicians, must be held accountable for the kind of patient care they honor, as evidenced in the curricula, requirements, and experiences they provide for health professionals in training. No single educational strategy or format will be sufficient to prepare professionals for the intellectual, emotional, cultural, and practical challenges of providing palliative, end-of-life, and bereavement care to children and their families. Likewise, varied incentives will be needed to reinforce educational initiatives including residency program requirements and inclusion of questions in licensure and certification examinations. Recommendation: To provide instruction and experiences appropriate for all health care professionals who care for children, experts in general and specialty fields of pediatric health care and education should collaborate with experts in adult and pediatric palliative care and education to develop and implement model curricula that provide a basic foundation of knowledge about palliative, end-of-life, and bereavement care that is appropriate for undergraduate health professions education in areas including but not limited to medicine, nursing, social work, psychology, and pastoral care; residency program requirements that provide more extensive preparation as appropriate for each category of pediatric specialists and subspecialists who care for children with life-threatening medical conditions; pediatric palliative care fellowships and similar training opportunities; introductory and advanced continuing education programs and requirements for both generalist and specialist pediatric professionals; and practical, fundable strategies to evaluate selected techniques or tools for educating health professionals in palliative, end-of-life, and bereavement care. The committee believes that these strategies for health professions education, if implemented and sustained, will be broadly beneficial. That is, they should reduce the suffering experienced by children who survive as well as children who die, and they should improve the support provided to all families who confront a child’s serious medical problem or death. To confirm this expectation and refine strategies, educational programs and tools will require evaluation to determine whether they are changing knowledge, attitudes, and behaviors, ideally over the longer term as well as in the short term.