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1 Introduction Emergency care for children's serious illnesses and injuries is a part of the health care system that parents hope never to need. Unfortunately, many families will need such care for their children, and when they do, they will want the best care possible. Life-threatening emergencies arise in many forms- motor vehicle crashes, drownings, poisonings, burns, pneu- monia, meningitis, and asthma only begin a long list. Each year, injury alone claims the lives of more children and young people between the ages of 1 and 19 than do all forms of illness. Acute illness, even though it leads to fewer deaths than injury, is responsible for most of the admissions to pediatric intensive care units (PICUs) and a large proportion of emergency department (ED) visits. Limited national data make it difficult to determine with any precision how many children require emergency care. What is known is that in 1988, some 21,000 children and young people under the age of 20 died from injury, and additional deaths occurred because of acute illness (NCHS, 1992b). Beyond these deaths are many more children who survive but must be hospitalized or treated in EDs and other outpatient settings. In 1990, chil- dren experienced about 266,000 hospitalizations principally for injury and another 701,000 just for respiratory conditions (NCHS, 1992a). Data on ED visits are especially weak, but estimates are that children account for about 30 million of the total (i.e., about one-third of a reported total of 92 million in 1990) (ACEP, l990d; American Hospital Association, 19911. Children in certain vulnerable populations, such as those with special health care needs or without adequate primary care, are likely to require emergency services even more than many other children. 26

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INTRODUCTION 27 Clearly, preventing emergencies is the best "cure" and must be a high priority, but as yet, prevention is far from foolproof. When prevention fails, families should have access to timely care by trained personnel within a well-organized system of emergency medical care. Services should encom- pass prevention, prehospital care and transport, ED and inpatient care at local hospitals and at specialty centers' and assistance in gaining access to appropriate follow-up care including rehabilitation services. However, for too many children and their families, those resources are not available when they are needed. This committee believes that efforts must be made to change that situation; in this report it outlines the steps it judges should be taken to make that change. THE ISSUE: ENSURING EMERGENCY MEDICAL CARE FOR CHILDREN WHO NEED IT Historically, the needs of children have largely been overlooked as emergency medical services (EMS) have developed in this country. The original ef- forts in EMS to institute more effective trauma and cardiac care were led by physicians trained in adult medicine, many of whom had little experience with pediatric patients and the unique features of pediatric care. Even the development of neonatal intensive care programs brought little attention to the needs of older infants, children, and adolescents. In the early 1980s, growing numbers of pediatric specialists and profes- sional societies began to participate in EMS system development; only then was attention focused on the need for specialized training programs and practice guidelines for pediatric emergency care. Efforts to introduce ap- propriate pediatric care brought changes in some EMS systems. Early suc- cesses such as Maryland's pediatric trauma system and the Los Angeles program to identify EDs qualifying as "emergency departments approved for pediatrics" or "pediatric critical care centers" have served as models for similar efforts elsewhere. Specialized training, which has become available through locally developed programs and nationally recognized courses, has helped emergency care providers acquire the knowledge and skills to im- prove their care of children. Efforts to improve emergency medical services for children (EMS-C) have had to contend with a daunting array of targets. EMS systems have rarely developed as comprehensive and coordinated programs. Often, the various elements of an EMS system state and local government agencies, prehospital providers and their agencies, hospital staff and ED and inpatient services, specialized referral centers, and so on operate under differing authorities and with differing perspectives. Trying to ensure that the emer- gency care needs of children are met has required working with each sepa- rate system element and through a variety of channels to implement changes.

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28 EMERGENCY MEDICAL SERVICES FOR CHILDREN Furthermore, this committee and many other observers are persuaded that improving EMS-C requires attention to broader aspects of child health care. Emergency medical care is caught up in many of the concerns endemic to the entire health care sector in this country: for example, complexities of the organization, delivery, and financing of health care; financial, insurance, and other barriers to access to appropriate care' inadequate numbers of health care personnel and perverse patterns of special and geographic location; and great variations in use of services and questions about the appropriateness and quality of health care (NRC/TOM, 1992a,b). Liability concerns are complicated by questions of consent for treatment when par- ents are unavailable or adolescents seek care on their own. What needs to be understood is that these matters are more vexing for children than they are for adults. In the past, much of the public has assumed that EDs and emergency care providers were adequately prepared to treat any patient. In fact, their ability to care for children has been limited, and the public is becoming increasingly aware of the need for attention to EMS-C concerns. In January 1992, a U.S. News and World Report cover story highlighted both the gen- eral lack of readiness in many EMS systems to care for children and the successful work that has been done in some cities and states to change that (Buckley, 1992~. The committee intends for its report to build on this increasing attention to EMS-C and to broader child health issues- among public officials, professional communities, parents, and the general public. THE INSTITUTE OF MEDICINE STUDY Origins of the Study The efforts of the pediatric community to improve emergency care for children received a substantial boost in 1984 with the passage of federal legislation (Public Law 98-555) authorizing a demonstration grant program on EMS-C. This program is administered by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Hu- man Services. Since the first four grant awards in early 1986, projects in 31 states have led to the development and dissemination of new training pro- grams and approaches to organizing services. Beginning with grants in 1991, the emphasis of the program shifted to implementation of EMS-C programs and to further work in specific areas through "targeted issues" grants. At the suggestion of Congress, HRSA requested that the Institute of Medicine (IOM) undertake a study to assess the need for and effectiveness of pediatric EMS. The IOM was expected to draw on the experiences of the demonstration grant projects but to look at the issues more broadly than these individual projects could.

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INTRODUCTION 29 The current study is, in fact, a logical extension of previous work by the National Academy of Sciences (NAS) and the IOM. In 1966, an NAS conference formulated recommendations regarding techniques and training in cardiopulmonary resuscitation (NAS/NRC, 19671. Also in 1966, the NRC issued the landmark report Accidental Death and Disability: The Neglected Disease of Modern Society (~AS/~RC, 1970a) which helped focus attention on the lack of adequate trauma care throughout most of the country. Subsequent reports on various aspects of EMS have also had a major impact in shaping the development of EMS systems around the na- tion (NAS/NRC, 1968, 1970b,c, 1972, 1978a,b, 1980~. More recent studies on injury and disability have also emphasized the need for skilled emer- gency care to limit the adverse consequences of injury and illness (NRC/ IOM, 1985; IOM, l991b). None of these reports gave much specific attention to pediatric care. With the current report, therefore, the IOM welcomes the opportunity to bring to EMS-C the kind of visibility that the NAS was able to bring to adult emergency care more than 25 years ago. Conduct of the Study In June 1991, a 19-member committee, chaired by Donald N. Medearis, Jr., M.D., was formally constituted by the IOM to conduct the requested study of pediatric EMS. Members of the committee were chosen so as to bring to the study a broad range of expertise and perspectives, including pediatrics, emergency medicine, trauma, nursing, prehospital emergency ser- vices, injury prevention, hospital administration, public policy, and local government, not to mention the personal perspective of parents concerned about the well-being of their children. Six members of the committee have participated in EMS-C demonstration grant projects.) The charge to this committee included the following tasks: estimate the nature and extent of the problems of mortality, morbid- ity, disability, and other negative consequences associated with emergency, out-of-hospital pediatric trauma and critical illness; estimate the adequacy of current efforts to reduce the negative con- sequences of these emergencies, including attention to the linkages between acute services, prevention, and rehabilitation; define the desirable characteristics of systems of services that could achieve the above effectively and efficiently, and specify the ways that existing EMS systems must change if the desired pediatric capacity is to be achieved; develop criteria and data requirements for surveillance of emergen- cies and their negative outcomes, their determinants and contributing fac

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30 EMERGENCY MEDICAL SERVICES FOR CHILDREN tors, and the evaluation of service systems dealing with pediatric emergen- cies and related prevention and rehabilitation; and consider means by which the federal government could encourage better systems for reducing pediatric emergencies and their negative conse- quences in the states and localities, including appropriate roles for the pri- vate sectors In responding to this charge, the committee specifically took into ac- count (1) actions by EMS system components needed to reduce the negative consequences of pediatric emergencies; (2) the full spectrum of facilities involved in responding to pediatric emergencies; (3) particular problems and capabilities of urban and rural settings; and (4) experience gained from the EMS-C demonstration projects. Between June 1991 and December 1992, the committee held six meet- ings at which it identified critical issues, explored committee members' views, sought additional information on specific concerns, formulated rec- ommendations, and refined drafts of this report. At two of those meetings, the committee was joined by invited guests who could speak directly to experiences and concerns not otherwise represented among committee members. Members of the committee also had an opportunity to talk with EMS-C grantees at two conferences held in connection with the HRSA demonstra- tion grant program. A VISION OF THE IDEAL SYSTEM: ESTABLISHING CRITICAL LINKAGES In too many spheres, public policies and programs for children seem to be fragmented, with special policies devised ad hoc or de novo to meet special needs (NRC, 1982; Harvey, 1990~. The committee found this unac- ceptable for EMS-C. In responding to its charge and conducting study activities, therefore, the panel adopted a broad vision of an ideal system for EMS-C, one that can contribute to a comprehensive and coherent approach to the care of children. The committee emphasizes that children must not be seen as a "special- interest group" in pursuit of appropriate emergency medical care. Instead, ensuring high quality care for children should be viewed as a further step in the process that has led EMS systems to develop increasingly sophisticated care for adults suffering heart attacks or injured in automobile crashes. Furthermore, emergency medical care cannot be treated as a process unre- lated to a child's routine health care needs. The connections between pri- mary care, emergency care, tertiary (i.e., specialty) care, and rehabilitation should be as seamless as possible. Furthermore, EMS-C systems need to be prepared to care for all children: regardless of age (infants, toddlers, school

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INTROD UCTION 31 children, or adolescents); condition (ill, injured, or with special health care needs); or economic resources (insured, uninsured, or in a public assistance program). These concerns led the committee to conclude that, if children's needs in emergency care are to be met, EMS-C must establish three important linkages. First' the separate components of 1SMS-C must be linked to form a system. Second, EMS-C must be linked to the larger EMS system. Third, EMS-C must be linked to the broader elements of child health care. Linking Components of EMS-C A diverse array of people, functions, and facilities are required for EMS-C. In the view of this committee, essential elements include commu- nity education, prevention programs, a means of requesting assistance (e.g., a 9-1-1 telephone system), skilled prehospital care, transport for ill and injured children, EDs prepared to offer basic emergency care to children, referral centers able to provide advanced emergency care and timely access to pediatric specialists, PICUs, other inpatient services, and access to fur- ther care such as pediatric rehabilitation programs. EMS-C must also in- clude planning for the care of children in disaster and mass casualty situa- tions. Basic services should be available in every community, but specialty care should be treated as a regional resource. The committee agrees fully with the many others who believe that these elements produce the most effective care when they are explicitly linked in an EMS-C system (e.g., AAP, 1988b, 1992e; Hailer, 1989b, 1990; Ramenofsky, 1989a; ACEP, l990d; Ludwig and Selbst, 1990; Seidel and Henderson, 1991; Dieckmann, 1992a). A system should provide a degree of planning and coordination that operates beyond the scope of any single component. No single system configuration will be appropriate for every community; local conditions, needs, and resources will shape how systems develop. Commu- nities should not, however, be willing to rely on a "system" that is simply the independent activities of various individual and institutional health care providers. This committee is also firmly committed to the position that care for pediatric trauma and illness should be provided under a single EMS-C um- brella. The efforts to develop trauma systems, including special pediatric trauma centers, have provided valuable experience in systems development, but they also have encouraged people to think about trauma separately from illness. As others have noted, the resources needed for trauma care and for illness care are more similar than different (Hailer, 1987, 1992; Ludwig, 1989; Ramenofsky, 1989b; Weinberg, 1989~. Surgical and medical special- ists each have contributions to make to the care of seriously ill or injured children.

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32 EMERGENCY MEDICAL SERVICES FOR CHILDREN Linking Children to EMS The efforts to further the development of EMS-C must not lose sight of the broader EMS picture. Because only limited numbers of pediatric spe- cialists and pediatric specialty hospitals are available across the country to care for ill and injured children, EMS-C needs to be able to rely on the services of the many EMS systems airead)r In place. That means working with them rather than attempting to duplicate their substantial resources in personnel, training, equipment, and experience (Hailer, 1987; ACEP, l990d; Dieckmann, 1992a). In any case, much as with care for trauma and illness, the line between caring for children and caring for adults is not always sharp (e.g., in obstetrical and perinatal care or care for adolescents and young adults tHaller, 19873~. EMS-C should also be coordinated with other related programs such as poison control centers and neonatal intensive care units. Just as the impulse to create a freestanding EMS-C system must be overcome, so must reluctance on the part of EMS systems to accept the obligation to prepare adequately for pediatric care (Foltin et al., 1990; Tho- mas, 1991b). EMS systems have traditionally been built around adult care by health care providers with little experience in caring for children. Some may not recognize the distinctive aspects of pediatric care; others may rec- ognize only that they are unsure what the appropriate care is. To change this situation, the pediatric community has begun and must continue to contribute its expertise to EMS systems; its primary responsibilities here are to ensure that children's needs are recognized and that resources needed to care appropriately for children (such as training, equipment, and guide- lines for treatment) are available. Linking Emergency Care to Children's Health Care Skilled emergency care is an important element of a comprehensive system of health care for children, but it is only one of many kinds of care that children need. Reliable access to primary care that can emphasize prevention and address, on a continuing basis, all aspects of children's health and development a concept described as a "medical home" should be the background against which EMS-C operates (Sia and Peter, 1988; Sia and Stewart, 1989; Hailer, 1990; Seidel and Henderson, 1991; AAP, 1992a,e). The American Academy of Pediatrics (AAP, 1992a) describes the medical home as care for infants, children, and adolescents that is "accessible, continuous, comprehensive, family centered, coordinated, and compassionate" and "delivered or directed by well-trained physicians who are able to manage or facilitate essentially all aspects of pediatric care" and who "should

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INTRODUCTION 33 be known to the child and family and able to develop a relationship of mutual responsibility and trust with them" (p. 251~. The committee supports a medical home that offers financially and geographically accessible care that is available around the clock and over time to provide continuity. With an emphasis on prevention and early inter- vention, a medical home can provide the kind of comprehensive.' fam~ly- centered care that can avert some emergencies and coordinate care when it is needed. The committee also recognizes that this kind of care is an ideal that is far from the reality of care available to many children. They believe, however, that EMS-C can promote better care for children by emphasizing the value of such a source of comprehensive and continuing care. Primary care providers have important contributions to make to EMS-C (AAP, 1988b, 1992e; Ludwig and Selbst, 1990; Seidel and Henderson, 1991~. They are principal agents for prevention of serious illness and injury by providing children with immunizations and other clinical pre- ventive services, by treating children in early stages of illness that other- wise might worsen, and by counseling parents and children about avoid- able risks for illness and injury (e.g., proper use of child safety seats or maximum water heater temperatures). They also should be able to inform parents about when and how to seek emergency care and be prepared themselves to treat emergency conditions encountered in the office set- ting. Further, they should help develop and support adequate EMS-C resources in the community. When emergency care is needed, a child's primary care provider should, at a minimum, be informed of the care the child received. When children need hospitalization (for stabilization, definitive care, and perhaps transport between facilities), as well as rehabilitation and follow-up care, the primary care provider should play a major role in coordinating that care. Involving the medical home in emergency care is especially important for children with special health care needs, whose treatment may differ from what other children might generally receive. GUIDING PRINCIPLES To this vision of EMS-C as a system of care that should operate as an integral element of the broader realms of EMS and child health, the com- mittee added other guiding principles. A fundamental position is that soci- ety has a special obligation to address the needs of children because they must depend on others for the protection of their health and safety and have no political voice of their own. EMS-C must be recognized as a public responsibility; the "market" cannot be relied on to produce the kind of planning and cooperation required to make services available to all who need them. The committee shares the view of the AAP (1992d) that children's

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34 EMERGENCY MEDICAL SERVICES FOR CHILDREN access to optimal emergency care should not be affected by socioeconomic status. Action on EMS-C is needed at the highest levels of federal and state governments to ensure that adequate resources are devoted to children's needs in this area. Legislative and regulatory authority can be used to create requirements and incentives to provide necessary 1SMS-C resources. Governmental action should not, however, be the only means by which advances in EMS-C are achieved. Community efforts by individuals and voluntary organizations and steps by health care or public safety profession- als can be vital to the initiation and success of EMS-C programs. Major societal issues are affecting EMS-C by increasing the need for emergency care and by altering.the ways in which that care is delivered. Although this committee is not in a position to address these issues in a comprehensive manner, it underscores their significance and calls for ap- propriate efforts by other groups and by society at large to work toward solutions. In recent years, urban violence associated with easy access to guns and illegal drugs has become a particular threat to the physical and psychological health of inner-city youth, creating a tragic increase in the need for emergency care. New products and technologies, despite efforts to reduce risks, can expose children to new hazards such as toxic substances or recreational injuries. For poor or uninsured children, inadequate access to primary care contributes to a greater need for truly urgent care because conditions remain untreated. It also leads to otherwise unnecessary use of the ED for basic care of minor illnesses and injuries. The continuing loss of health care services in rural areas and the increasingly desperate financial position of many states and localities impose constraints not only on re- sources available to support emergency care but also on all publicly funded health care programs. The committee believes that problems such as these demand urgent attention. Addressing the current needs in EMS-C will not resolve these larger issues, but it can help ensure that high-quality emer- gency care will be available to children who require it. ORGANIZATION OF THE REPORT This report reflects the broad scope of the committee's concerns and discussions. It presents those matters that the committee sees as especially important for EMS-C and explains the basis for the committee's formal recommendations. The next two chapters provide background regarding emergency medical care for children and introduce many of the issues that subsequent chapters address in greater detail. Chapter 2 describes differ- ences between children and adults that account for differences in the care they need and examines the epidemiology of serious illness and injury in children. Chapter 3 presents a history of EMS and EMS-C and reviews the

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INTROD UCTION 35 organization and operation of EMS systems and their components. Note: Readers familiar with EMS and EMS-C may wish to go directly to the subsequent chapters that address specific issues and recommendations. Chapter 4 examines education and training for both health care provid- ers and the public. The committee's recommendations target curriculum changes and other improvements in education programs for health care ~?ro- viders that will better prepare them to deliver emergency care to children. The committee also addresses preparing primary care providers, parents, and other adults responsible for the care of children (e.g., teachers, day-care providers, coaches) to recognize the need for emergency care, to obtain that care, and to offer basic first aid and resuscitation to children until profes- sional care is available. Chapter 5 turns to those tools that health care providers and that emer- gency care systems must have to deliver good emergency care to children: appropriate equipment; sound guidelines for pediatric care; pediatric exper- tise in medical direction for prehospital care and system planning; a clear indication of the pediatric care capabilities of area hospitals; and a regional approach to emergency care to help make efficient and effective use of limited pediatric specialty resources. Chapter 6 takes up formal and informal communication resources needed in EMS-C. The committee emphasizes the need for public access to emer- gency assistance through 9-1-1 and enhanced 9-1-1 telephone systems. It also addresses communication needs within EMS-C systems, including technical aspects of communication and the role of communication in coordinating patient care; arranging expeditious transfers to other sites for more special- ized care; and generally for planning, operating, and evaluating EMS and EMS-C activities. Chapter 7 emphasizes the need to develop on a nationwide basis good information resources in EMS-C for planning system operations and evalu- ating performance and care. Recommended steps include identification of a uniform core of essential data elements and their use in systematic data collection. Use of existing diagnostic codes to identify external causes of injury (known as E-codes) is also recommended as a source of valuable information on injury risks. In addition, Chapter 7 presents a wide-ranging research agenda emphasizing questions on clinical aspects of care, measur- ing severity and outcome of illness and injury, costs, optimal system con- figuration and operation, effective approaches to education and training, and prevention. ~ 1 In Chapter 8, the committee makes its final recommendations, which call for establishing identifiable leadership in EMS-C at the federal and state levels through federal and state agencies, with the assistance and over- sight of advisory councils. The committee recommends modest amounts of federal funding to implement new programs, to support research activities,

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36 EMERGENCY MEDICAL SERVICES FOR CHILDREN to create an information center, and to promote the development of EMS-C programs and resources and their integration into wider EMS systems at the local, regional, and state levels. The chapter also discusses the roles of local or county health agencies, state and local professional groups, com- munity groups, and concerned individuals. Chapter 9 concludes the report with a brief examination of some of the problems facing EMS and EMS-C today and possible implications for EMS- C of some of the important issues facing the larger health care community. AUDIENCE FOR THIS REPORT The committee intends for this report to speak to a broad audience among public officials, the health care community, parents, and the general public. Some portions will be of greater interest and relevance than others to specific readers. Nevertheless, if the recommendations set forth are to be followed, many groups and individuals will have roles to play. Federal, state, and local officials and legislators can give valuable lead- ership in efforts to ensure that EMS systems are prepared to provide the care that children need. In both the policies they implement and the re- sources they make available, officials at all levels of government will do much to determine the progress that is made. This report offers a guide to those matters that warrant the highest priority. The committee hopes that this report will help make a broad range of health professionals aware of the need for action to ensure that clinicians are adequately trained, necessary resources (e.g., equipment, practice guide- lines, and medical direction) are available in identifiable facilities, commu- nication technologies and practices support optimal care, information sys- tems and data are available to contribute to planning and evaluating care, and essential research is undertaken. Among those whom the committee wishes to reach are physicians in pediatrics, family practice, surgery, and emergency medicine; nurses in general and specialty-care settings; emer- gency medical technicians at all levels; hospital administrators; and medical professionals responsible for organizing and operating EMS systems. Parents are a crucial part of the audience for this report. The committee wants to encourage parents and other responsible adults to become aware of their community's EMS-C resources and how to use them. Individuals and organizations within a community can become strong and effective advo- cates for high-quality emergency care resources for their children. THE COMMITTEE'S GOAL The "top down" approach to implementing EMS-C, which is embodied in the proposals for federal and state agencies and advisory groups, is es

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INTRODUCTION 37 sential to ensure that the needs of all children are addressed in a compre- hensive and efficient manner. A"bottom up" approach, which depends on the efforts of concerned and committed individuals and communities, is a vital element in making sure that EMS-C is recognized as a priority and receives the attention it requires. The committee's vision of the future of EMS-C as an integral element of comprehensive, high-~uality EMS sys- tems and firmly linked to the idea of a medical home for health care for children holds both of these approaches to be critical to success. Thus, the challenges that lie ahead are formidable. The committee's goal for this report is to clarify those challenges and to identify the ways they can be successfully and expeditiously met. Further, it aims to intensify the focus on emergency care of children and, indeed, to make it a genuine priority with decisionmakers who are in a position to influence the future direction of emergency medical care and care for children generally. NOTE 1. The six committee members who participated in EMS-C demonstration grant projects are Martin R. Eichelberger, M.D.; J. Alex Haller, Jr., M.D.; Patricia A. Murrin, R.N., M.P.H.; James S. Seidel, M.D., Ph.D.; Calvin C.J. Sia, M.D.; and Joseph J. Tepas III, M.D.