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Summary 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 they will want the best care possible. Life-threatening emergencies arise in many forms motor vehicle crashes, drownings, poisonings, burns, pneumonia, meningi- tis, and asthma only begin a long list. Each year, injury alone claims more lives of children between the ages of 1 and 19 than do all forms of illness. Most admissions to pediatric intensive care units, however, are due to acute illness. Overall, some 21,000 children and young people under the age of 20 died from injuries in 1988. Nearly 21,000 more deaths occurred because of illness and other disorders (excluding congenital anomalies and birth- related conditions). Thousands more children were hospitalized and mil- lions more were treated in emergency departments (EDs). 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 emergency medical services (EMS) system. Services should encompass prevention, prehospital care and transport, ED and inpatient care at local hospitals and specialty centers, and assistance in gaining access to appropriate follow-up care including rehabilitation services. For too many children and their families, however, these resources have not been available when they were needed. Although EMS systems and hospital EDs are widely assumed to be equally capable of caring for chil- dren and adults, this is not true. In many EMS systems, children's needs
2 EMERGENCY MEDICAL SERVICES FOR CHILDREN have been overlooked as services developed for adult trauma and cardiac patients. Progress has been made in recent years to improve emergency care for children, but much work remains to be done. This report identifies essential steps to be taken to make available to children the high quality emergency care they need and deserve. RECOGNIZING A NEED FOR EMERGENCY MEDICAL SERVICES FOR CHILDREN Origins of the Study and Report In 1984, Congress approved a demonstration grant program to expand access to and improve the quality of emergency medical services for chil- dren (EMS-C) available through existing EMS systems and to generate knowledge and experience that other states and localities could draw on in their efforts to enhance EMS-C capabilities. This ongoing program is operated by the Health Resources and Services Administration (HRSA) of the U.S. Depart- ment of Health and Human Services (DHHS). In response to continuing congressional interest, HRSA requested that the Institute of Medicine (IOM) undertake a study of pediatric emergency medical services to look at the issues more broadly than individual demon- stration projects could. The IOM study was guided by a 19-member com mittee with expertise in pediatrics, emergency medicine, trauma, nursing, prehospital emergency services, injury prevention, hospital administration, public policy, and local government (see roster), and it benefited from the contributions of others who met with the committee. The committee's report examines the nature and extent of acute illness and injury among children, reviews the origins and organization of EMS systems, describes the current state of effective care, addresses data and standards needed for surveillance and evaluation of services and outcomes, and recommends policy mechanisms to promote development of better sys- tems of care. The committee took into account system components needed to reduce the negative consequences of pediatric emergencies, the full spec- trum of facilities involved in pediatric emergencies, particular problems and capabilities of urban and rural settings, and experience gained from the demonstration projects. The report is addressed to a wide audience: health policymakers; health professionals, including physicians in pediatrics, family practice, surgery, and emergency medicine, nurses in emergency, critical care, and pediatric settings, and prehospital care providers at all levels; hospital administrators; members of voluntary organizations concerned with public safety; parents and the concerned public; and the officials responsible for organizing and operating EMS systems at the national, state, and local levels.
SUMMARY 3 A Vision of Emergency Medical Services for Children Public policies and programs for children are often fragmented, with special initiatives devised ad hoc or de novo to meet special needs. The committee finds this unacceptable for EMS-C. It adopted a broad vision of an ideal EMS-C system as part of overall EMS and as part of a comprehen- sive and coherent approach to children's health care (which should include a "medical home" for routine care). The connections between primary care, emergency care, tertiary (i.e., specialty) care, and rehabilitation should be as seamless as possible. EMS-C systems must be prepared to care for all children: regardless of age (infants, toddlers, schoolchildren, or adolescents); condition (ill, in- jured, or with special health care needs); or economic resources (insured, uninsured, or in a public assistance program). The committee also empha- sizes that EMS systems should view ensuring high quality emergency care for children as a further step in the same process that has led them to develop increasingly sophisticated care for adults. The committee concluded that, if children's needs in emergency care are to be met, EMS-C must establish three important linkages. First, the separate components of EMS-C must be connected to form a system. Sec- ond, EMS-C must be integrated into the larger EMS system. Third, EMS-C must develop strong ties to the broader elements of child health care. Two approaches are needed to fashion these linkages. First, a "top down" ap- proach-reflected in recommendations for federal and state action is es- sential to ensure that the needs of all children are addressed in a compre- hensive, efficient, and equitable manner. Second, 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 at the local level. The committee's examination of EMS-C issues proceeds from the position that both approaches are essential. Children and Why They Need Special Attention Because no consensus exists regarding the age at which childhood ends and adulthood begins, the committee declined to fix a specific age range to define the "children" to be served by EMS-C. Instead, the committee em- phasizes its concern for the entire span of childhood: infants, toddlers and preschoolers, schoolchildren, and adolescents. The one exclusion deemed appropriate for this report is newborns and the intensive care that they may require immediately after birth. Care for seriously ill and injured children cannot presume that they are simply "little adults." It can, in fact, be more difficult to assess the severity
4 EMERGENCY MEDICAL SERVICES FOR CHILDREN of illness or injury in children than in adults. Important anatomic, physi- ologic, and developmental differences exist between children and adults: children are smaller and proportioned differently; normal respiratory rates, heart rates, and blood pressure differ; characteristic changes in vital signs that signal deterioration in adults may not occur in children; and stages in ch~ldren's physiologic' emotional, and behavioral developmer~t affect their responses to medical care and their risk of injury and illness. Epidemiological Considerations Limited data make it difficult to determine in detail how many children need emergency care, the kinds of illness and injury they experience, and the nature and outcome of the care they receive. What is clear is that injury is the leading cause of death among children over the age of 1 year. Over- all, injuries associated with motor vehicles account for the largest number of deaths. Drowning, burns, and fire-related injuries are significant con- tributors to deaths, especially among younger children. Among adolescents, many deaths are due to homicide and suicide. In anatomic terms, brain injuries (caused directly by trauma or as a secondary result of illness or other injury) contribute to many deaths and long-term impairments for sur- vivors. Fewer children die from acute illnesses than from injuries, but many more are hospitalized. In 1990, for example, children experienced about 266,000 hospitalizations principally for injury and 701,000 for respiratory conditions (which represents nearly a third of all hospitalizations among children less than 15 years old). Respiratory, circulatory, or necrologic crises, which can have a variety of causes, characterize many illness-related emergencies. With no commonly accepted set of diagnoses defining illness- related emergencies, however, determining specific numbers of cases from available mortality and hospitalization data is difficult. Some deaths attrib- uted to sudden infant death syndrome, the second leading cause of death among infants, may be due to child abuse or inadvertent suffocation. Children with chronic illnesses or other special health care needs are especially vulnerable to serious injury and illness. They are likely to need specialized emergency care, to need care more frequently than other chil- dren, and to need care for complaints that would be less serious in funda- mentally healthy children. Several other factors are also of special concern. Adolescent girls may require emergency care for pregnancy-related problems, including prema- ture labor. Children experiencing psychiatric or behavioral emergencies require care from mental health professionals as well as from medical and surgical providers. Violence, in the form of homicide, suicide, assault, and child abuse, is a special threat to children's physical and emotional well
SUMMARY 5 being. Increasingly, firearms are used in homicide and suicide among chil- dren. Data on ED visits and prehospital care, for injury or illness, are espe- cially weak. Estimates are that children account for 25 to 35 percent of all ED visits (about 30 million in 1990) and appear to make up about 10 percent of patients receiving prehospital services. The most seriously ill and injured children may require care in pediatric specialty centers and access to rehabilitation services. Demands on EMS-C are being increased by factors other than simply the frequency of illness and injury among children: inadequate access to (or use of) primary care; increased survival and home care of children who have chronic illnesses or are technology-dependent; and staff, facility, and other resource limitations. Office-based physicians encounter children re- quiring emergency care, but many offices may not be adequately prepared to provide the immediate treatment that those children need. Lifetime costs associated with injury have been estimated at $13.8 bil- lion for children under age 15 and $39.1 billion for 15- to 24-year-olds. Asthma is one of the few major illnesses for which costs have been esti- mated: annual direct and indirect costs for children under age 18, excluding medications, amounted to $1.3 billion. Both injury and illness carry nonmonetary costs in pain and distress for children and their families. Key Historical Developments Two developments in the mid-1960s brought EMS to the attention of federal, state, and local governments and the medical community. First, the landmark report Accidental Death and Disability: The Neglected Disease of Modern Society, published in 1966, highlighted the need for better trauma care. Second, work by physicians in Ireland demonstrated that rapid treat- ment of cardiac emergencies could improve survival. Trauma and emer- gency cardiac care continue to be significant priorities for EMS systems. Federal funding was first made available to support development of EMS systems through the National Highway Traffic Safety Administration of the Department of Transportation and through the Department of Health, Education, and Welfare (now DHHS) under the 1973 Emergency Medical Services Systems (EMSS) Act. A grant program underwritten by the Robert Wood Johnson Foundation provided further resources at this important de- velopmental stage. The DHHS role decreased in 1981 when EMS funding was folded into a block grant program that allowed states to decide how to distribute funds among seven preventive health and health services pro- grams. EMS was allocated substantially less support, but over time, many states and localities increased their own funding for EMS. Resources for emergency care were developing within the health care
6 EMERGENCY MEDICAL SERVICES FOR CHILDREN community, including training programs for physicians, nurses, and prehospital providers (i.e., emergency medical technicians [EMTs] and paramedics) and specialized trauma units. During the 1970s, however, pediatricians and pediatric surgeons recognized that children's emergency care needs were not receiving adequate attention. To correct this oversight, they began working with hospitals, EMS agencies' their colleagues' and their commu- nit~es to improve the ability of [:MS systems to care [or children. Early successes such as creation of a regional pediatric trauma center as part of Maryland's statewide EMS system and the Los Angeles program to identify EDs qualifying as "emergency departments approved for pediat- rics" or "pediatric critical care centers" have served as models for similar efforts elsewhere. Training in pediatric emergency care became available through locally developed programs and nationally recognized courses (e.g., Pediatric Emergency Medical Services Training Program, Pediatric Advanced Life Support [PALS], and Advanced Pediatric Life Support [APLS]~. Awareness of EMS-C issues increased with the start of the EMS-C demonstration grant program in HRSA. Since it began, the program has supported 20 demonstration projects, 11 implementation programs, and 5 special projects. Grantees have created a variety of products including training materials, treatment protocols, and system guidelines. Two EMS-C resource centers have also been established to assist grantees and others interested in emergency care for children. PRIORITY ISSUES IN IMPROVING EMERGENCY MEDICAL SERVICES FOR CHILDREN The EMS S Act did much to shape the development of EMS systems by specifying 15 essential functions, including training, communications, trans- portation, critical care facilities, and standard record keeping. For EMS-C, this committee sees seven essential areas of system responsibility: identify- ing emergencies; ensuring access to the services of the system (e.g., through 9-1-1 telephone service) with dispatch of equipment and personnel; provid- ing appropriate prehospital care; transporting patients; providing definitive medical care; communicating among emergency care providers and with others, including parents and primary care providers; and using information systems and feedback to assess and improve patient care, to enhance system perfo~nance, and to identify injury prevention needs. Achieving these goals involves medical and administrative consider- ations and requires the participation and cooperation of a variety of indi- viduals and institutions. No one agency or institution has authority over all the elements involved. Thus, efforts to address the EMS needs of children must consider all the elements that constitute EMS systems, understand the specific channels through which change can be implemented, and make
SUMMARY EMS-C a genuine priority with decisionmakers in a position to influence the future direction of emergency medical care. With this report, the com- mittee identifies issues of special concern for EMS-C and presents recom- mendations for specific actions that should be taken. Education and Training Because many aspects of emergency care are different for children than for adults, health care professionals and others with responsibility for chil- dren must have the specific knowledge, understanding, and skills necessary to provide appropriate care. The committee's review of desirable elements of such educational efforts led to seven formal recommendations, which promote its view that better education and training are essential for achiev- ing larger goals for EMS-C. Programs for the Public Parents, as well as others with routine responsibility for the well-being of children (e.g., teachers, school nurses, day-care providers, coaches, life- guards and other camp and recreation personnel, and scouting and other youth group leaders), play a vital role in three areas: preventing illness and injury, recognizing (when prevention has failed) that urgent medical care is needed, and gaining access to such care. Evidence suggests that parents are not always aware of the greatest risks to their children, and they can, there- fore, be poorly prepared to prevent them. Parents and the public must also understand when and how to use the EMS system. Needed emergency care may be delayed if the seriousness of a child's condition is not recognized. In other cases, unnecessary use of EMS resources can impair the system's ability to provide care for true emergencies. Public information and educa- tion programs on EMS-C should ultimately reach the entire population, including children themselves, but they should be aimed first at parents and adults who are involved most directly in the care, education, and oversight of children. The committee concluded that public education efforts should focus on three areas: prevention and safety; basic first aid and cardiopulmonary resuscitation (CPR); and when and how to use the EMS system. Programs should include a core of universally appropriate material plus issues of specifically local concern. Guidance in using the EMS system, for ex- ample, must always take into account specific local mechanisms for re- questing assistance, and prevention messages should target particular risks for illness and injury that children in that community face. Opportunities for training include health care visits, schools, day care, recreation, and community programs. A child's primary care provider should
8 EMERGENCY MEDICAL SERVICES FOR CHILDREN play an important role in ongoing education of parents. Public education programs need to be a continuing activity rather than a special project and must be reviewed periodically to ensure that their content is consistent with current medical practice guidelines. To address these issues, the committee recommends that: ~ states and localities develop and sustain programs to provide to the general public of all ages adequate and age-appropriate levels of education and training in safety and prevention, in first aid and car- diopulmonary resuscitation, and in when and how to use the emergency medical services system appropriately for children. It recommends fur- ther that: the content of such programs reflect the particular needs of each community; -the content of such programs reflect the special medical, de- velopmental, and social needs of children; parents and other adults who are responsible for the care and education of children (e.g., day-care workers, teachers, coaches) receive highest priority in such programs; and adolescents also be a high priority in this endeavor. · states and localities develop and maintain specific guidelines or criteria to ensure basic consistency and quality of educational programs across communities and populations reached, including specific content elements that those education programs should cover. Programs for Health Care Professionals Until very recently, curricula in emergency care have included little pediatric content and pediatrics curricula have given little attention to emer- gency care. The committee endorses efforts to incorporate essential ele- ments of pediatric emergency care into the initial and continuing training of all health care providers who care for children. Some material should be included in training programs for all providers; other training needs are specific to particular kinds of providers. General education and training needs include recognizing characteristic signs of serious illness or injury in children of all ages, rendering essential care for all pediatric patients, and addressing psychosocial aspects of pedi- atric emergency care. Underlying these should be adequate training in pediatric anatomy, physiology, and pathophysiology. In addition to clinical training, emergency care providers must learn about the organization and operation of EMS systems, particularly local and regional services, and about the importance of data collection and analysis.
SUMMARY 9 Ensuring adequate training for all practitioners will require attention to initial qualifying training for prehospital providers, to beginning years of education for other health professionals, to graduate and residency training programs for nurses and physicians, and to continuing education courses. The committee specifically recommends that: · organizations that accredit training programs for prehospital care providers require that the curricula for EMT-Basic, EMT-Intermediate, and EMT-Paramedic provide training in pediatric basic life support; in the medical, developmental, and social needs of all children; and in caring for children with special health care needs. · accreditation organizations require that curricula for EMT-Paramedic programs include training in advanced life support for children. · appropriate accrediting organizations require that the primary curricula for all health care professionals include training in basic re- suscitation skills and the use of the emergency medical services system. These curricula must give specific attention to the unique medical, de- velopmental, and social needs of children. · appropriate accrediting organizations ensure that graduate nurs- ing programs in emergency, pediatric, and family practice nursing in- clude training in emergency care for children, including advanced re- suscitation. . the Accreditation Council for Graduate Medical Education en- sure that residency programs for emergency medicine, family medicine, pediatrics, and surgery include training in emergency care for children, including advanced resuscitation. Continuing education courses (e.g., PALS, APLS) are currently a major source of training in pediatric emergency care for existing practitioners. Although such courses are not sufficient by themselves as a long-term ap- proach to providing needed training, they are an essential component of an overall program of EMS-C training. Because most providers will have limited opportunities to apply their knowledge and skills, they need training resources that will enable them to refresh their skills and to learn about current practice guidelines. All parties involved with EMS-C should address certain other education and training issues as well. These include making appropriate training available and affordable, particularly to volunteers and to providers in rural areas; evaluating education and training efforts with special attention to the problem of poor retention of CPR and other skills (by members of the public and by health care providers); establishing a central source of infor- mation on EMS-C education and training materials; and financing education . . ant training.
10 EMERGENCY MEDICALSERVICES FOR CHILDREN Putting Essential Tools in Place Emergency care providers must have system resources available that enable them to use their training and skills successfully. Despite impressive progress in recent years, EMS systems must improve their ability to meet the needs of pediatric patients in five major areas. Equipment and supplies Including medications) necessary for treating children are often unavail- able. Protocols standardized sets of procedures or decision algorithms that are developed to guide patient care have not been developed for pedi- atric emergency care. Medical control, which entails physician oversight of care provided by prehospital personnel and input into broader planning ef- forts, lacks sufficient pediatric expertise. Categorization of the pediatric emergency care capabilities of hospitals and other facilities has not been extensive enough. Finally, regionalization of care deliberate efforts to establish relationships between a specialty center and the communities and community hospitals in a natural (geographic) referral area has been sty- mied in many areas by administrative, economic, and political obstacles. More investment in supplies and equipment appropriate for children (across the entire pediatric age range) would be a significant and cost- effective improvement in the capacity of EMS systems to discharge their responsibilities to children, in part because the marginal cost (to EMS sys- tems) of having durable and disposable materials and supplies suitable for pediatric cases is quite low. The committee calls for each health care provider or agency to define the emergencies that occur in the patient popu- lations that they serve and to ensure that the necessary and proper equip- ment is available to treat critically ill and injured neonates, infants, chil- dren, and adolescents. To this end, the committee recommends that all state regulatory agencies with jurisdiction over hospitals and emergency medical services systems require that hospital emergency departments and emergency response and transport vehicles have available and maintain equipment and supplies appropriate for the emergency care of children. The objectives are to ensure that all hospital EDs and EMS systems main- tain at least a minimal level of essential equipment and that consistency in these requirements is appropriately balanced with the flexibility needed in special circumstances. If these materials are used infrequently, they must be monitored on a regular basis so that they do not deteriorate or become outmoded. Protocols have a role to play in every phase of the EMS system. They help direct decisions about when and where care should be given as well as guide what care is rendered and how. Each phase of care needs specific kinds of guidance. Protocols have a solid place already in many areas of health care, including EMS for adults. What is required now is more sys- tematic development, dissemination, application, and evaluation of guide
SUMMARY 11 lines and protocols with tested pediatric elements and components for the full range of EMS-C activities-dispatch, prehospital care, transport, ED services, hospital inpatient care, and emergency care in outpatient settings. Medical control operates in two ways. On-line medical control implies real-time direction by designated medical personnel of prehospital care for seriously injured or ill children; services may include authorization for ad- vanced life support procedures, triage and destination assignment, and man- agement of patients who refuse care. Off-line medical control operates through policymaking activities, training programs, quality assurance ef- forts, and the like. In comparison with on-line medical control, these ef- forts are likely to be broader in scope and setting and to relate more to the long-term development of guidelines and protocols. Both on-line and off- line medical control require active participation, leadership, and commit- ment from health care professionals (particularly physicians) with experi- ence and training in caring for infants, children, and adolescents. Categorization of institutions and regionalization of services, often as- sociated conceptually and practically, demand stronger involvement and in- vestment than has been true heretofore. Categorization is an effort to iden- tify the readiness and capability of a health care facility (usually a hospital) and its staff to provide optimal emergency care. Once criteria for classify- ing capabilities are available, implementation mechanisms can range from entirely voluntary to government designation. Regionalization (e.g., of ground and air transport systems, intensive care units, trauma centers, or burn cen- ters) is often a more formal effort by outside agencies to specify particular centers or institutions that can offer complex, sophisticated services in a particular geographic area. It also can involve initiatives to develop formal arrangements between those facilities and less specialized ones regarding patient referral so as to promote optimal allocation of health care resources. Such arrangements may need to span state boundaries to bring services to those states, or parts of states, that lack specialty centers of their own. If categorization and regionalization are pursued collaboratively, they can make EMS-C, as part of larger EMS systems, both more efficient and more effective. The range of interested parties professional groups, indi- vidual practitioners and institutional providers, public and patient advocacy groups, local and state governments-creates special complexities. To im- prove chances for accurately categorizing facilities and designating regional referral centers for pediatric care, the committee generally prefers "local" as contrasted with "national" decisionmaking and solutions. Nevertheless, it sees some need for guidance at the national and state level to foster appro- priate identification and classification of referral centers and to overcome difficult inter- and intrastate questions of legal and regulatory matters, transfer policies, and reimbursement. Specifically, the committee recommends that all state regulatory agencies with jurisdiction over hospitals and EMS
12 EMERGENCY MEDICAL SERVICES FOR CHILDREN systems address the issues of categorization and regionalization in over- seeing the development of EMS-C and its integration into state and regional EMS systems. Communication Communication is a critical, but complex, element in the successful operation of systems of emergency medical care. Context plays a strong role: actually delivering services to specific individuals raises communica- tion issues different from those related to planning and exchanging informa- tion independent of patient care. Special questions about technology and equipment must be addressed. Participants in the communication process are obviously important factors, because patients and their families (or other bystanders), providers, and administrators all interact in various combina- tions and for various purposes, often under stressful circumstances. Better communication among all the providers who care for a patient calls for particular attention to follow-up on patient outcomes and further care and for feedback from other providers. Public Access to Emergency Services Easy public access to the EMS system is essential and can be facilitated with a universal emergency access number 9-1-1 and enhanced 9-1-1 (E9-1-1) emergency response systems. The latter typically draw on com- puterized databases to identify automatically the telephone number and lo- cation of the caller; this, in turn, means that the EMS system can route calls to appropriate jurisdictions and send assistance even if callers cannot com- municate effectively because of their condition, language barriers, or other reasons. All these factors mean that response times can be reduced, with presumably more effective intervention and, ultimately, improved patient outcomes. Movement toward universal adoption of 9-1-1 or E9-1-1 systems is regarded as so significant that the committee recommends that all states ensure that 9-1-1 systems are implemented. The 9-1-1 system must be universally accessible and effectively linked to the emergency medical services system. Communities with 9-1-1 systems in place should move toward enhanced 9-1-1 capabilities. Communities with no 9-1-1 system should move directly to an enhanced 9-1-1 system. Communication Within EMS Systems Sometimes, communication takes the form of obtaining accurate and timely advice rather than summoning an EMS response. Poison control
SUMMARY 13 centers, especially those certified by the American Association of Poison Control Centers, can give the public and emergency care providers special- ized guidance via telephone for managing the care of children exposed to potentially toxic materials. Parents also seek telephone advice from hospi- tal EDs. This service can yield benefits, especially if given by well-trained staff with adequate guidance, but it also poses risks because no direct as- sessment of a child's condition can be made. The committee strongly advo- cates appropriate training, clear protocols, careful documentation, and rou- tine monitoring in ED programs offering telephone advice. Communication is a key component in prehospital services, using tech- nologies that range from quite commonplace to rather sophisticated (e.g., standard telephone links, radio systems, microwave networks, and satellite links). On-line medical control requires good communications systems to link prehospital personnel with designated medical personnel (e.g., at a base hospital, which can be quite distant). When EMS systems develop on-line medical control, they must consider factors such as the availability and cost of base-hospital staff, the level of care that prehospital providers are autho- rized to deliver, and the perceived need for direct medical oversight of prehospital care. In rural areas, where ED personnel and expertise in emer- gency medicine are limited, on-line medical direction may depend on com- munications systems that permit contact with more distant hospitals. Good communication in hospital care is also crucial. ED personnel consult with "local" experts and a child's primary care physician, as well as with regional and national experts through poison control centers, pediatric referral centers, and telephone hot lines. Facsimile communication can be a valuable adjunct for long-distance and local consultation. When children must be transferred to referral centers, clear communication between hospi- tals and health care providers involved is essential to ensure that vital clini- cal and administrative information is exchanged. Here the committee be- lieves that written transfer agreements between hospitals speed the transfer process by settling many procedural and administrative matters in advance. Development of centralized communication services also may ease transfer arrangements and help make efficient use of regional resources. Communication plays an important role in ensuring that an ill or in- jured child obtains the full range of services, from prevention to acute care and on to rehabilitation, that comprise EMS-C. The committee thus argues that EMS-C systems must give special attention to follow-up in three areas: primary care, post-ED care, and rehabilitation. In addition, more and better feedback regarding patient care and system performance is needed through- out EMS and EMS-C systems; it promotes optimal patient care and effec- tive linkages between system components. Feedback needs to reach indi- vidual providers as well as managers and administrators and may require systematic data collection.
14 Communication About EMS-C EMERGENCY MEDICAL SERVICES FOR CHILDREN Important communication about EMS-C should occur independently of the delivery of care to children. Providers with pediatric expertise must be active in organizing and operating EMS and EMS-C systems. Public educa- t~n should be ax integral part of these systems; injury prevention is an especially high priority. Opportunities for valuable communication among providers exist through various professional activities, including those re- lated to the EMS-C demonstration grant program. Public safety organiza- tions should be viewed as useful partners in communications about EMS and EMS-C. Building on these activities argues for a national EMS-C center or clearinghouse activity that can collect and evaluate EMS-C mate- rials and serve as a focal point for information exchange. Planning, Evaluation, and Research Are children getting the EMS care they need, when and where they need it? Today, we cannot really answer this question in any systematic way. To answer it, three activities must receive attention: planning, evalua- tion, and research. Meeting Data Needs for Planning and Evaluation Most of the committee's attention to planning and evaluation centered on routine data collection efforts at the institutional, system, local, state, and national levels. These tasks require access to data, analytical resources to transform those data into meaningful information, and ways to use and disseminate the information to improve the care that children receive and to target prevention efforts. Four central points guided the committee's think- ing about EMS-C data: (1) information on structural aspects of care, pro- cesses of care, and outcomes of care is essential; (2) individual components of an EMS system as well as the system as a whole must be examined; hence, information on individual patients needs to be linked across settings and providers; (3) analyses must be conducted at the local, state, and na- tional levels; specific data needed at each level may vary, but in all cases, data collected for one level (e.g., nationally) should be useful at every level below that (e.g., states and localities); and (4) routine information gathering is a prerequisite for planning and evaluation purposes; such information may be useful for research, but additional primary, targeted data collection and analysis will often be required. In principle, data on emergency care for children and the systems through which it is provided are available from an assortment of sources: prehospital services, hospital EDs, inpatient services in hospitals, trauma registries,
SUMMARY 15 death records, health insurance claims forms, poison control centers, injury surveillance systems, and tracking and reporting systems for motor vehicle crashes. The EMS-C demonstration projects have also been a significant source of detailed information on EMS-C matters. Each of these data sys- tems has different advantages and disadvantages; in no case, however, can one source provide the full range of information needed for planning, evalu- ation, or research. The committee identified several problems warranting special attention and offered specific recommendations to address them. First, the lack of uniformity and consensus about data elements has led to a patchwork of information about EMS-C and little possibility of comparing or aggregating data across systems. Second, the inability to link and aggregate data, in particular to link information on individuals for episodes of care and to aggregate data across systems, makes it difficult to assess the effectiveness of emergency care. Third, use of diagnostic coding for cause of injury must be expanded. The ICD-9-CM (International Classification of Diseases, ninth edition, clinical modification) external cause-of-injury codes, or E-codes (which classify the mechanism of injury), are available and in use in some settings. This information is valuable in identifying specific risk factors, setting targets for injury prevention programs, monitoring the effectiveness of prevention efforts, and assessing the cost of care for specific kinds of injuries. These points were regarded as sufficiently persuasive that the committee recom- mends that states and other relevant bodies adopt requirements that ICD-9-CM E-codes be reported for all injury diagnoses reported for hospital and ED discharges. Fourth, valid data and performance indicators must be available. Diag- nosis and measures of acuity or severity of illness and injury require par- ticular attention. Fifth, knowledge of patient outcomes is essential for de- termining whether children are receiving good emergency care, but three fundamental concerns remain unresolved: what outcomes to measure, when to assess them, and how. The committee endorses the view of other IOM committees that many outcomes other than death must be considered: pres- ence or absence of disease, various types of impairments, functional limita- tions, disabilities that interfere with age-appropriate activities, and core do- mains of health status (physical mobility and functioning, social and role functioning, and emotional and mental well-being). More comprehensive information about the nature and outcome of emer- gency care for children is essential. Therefore, developing better and more extensive data collection and analysis programs, with a common core of basic descriptive data, must be a high priority for EMS-C systems across the country. Data are needed from all phases of care for emergencies, including prehospital, ED, inpatient and critical care, and rehabilitation. To
6 EMERGENCY MEDICAL SERVICES FOR CHILDREN promote progress in this area, the committee recommends that states implement a program to collect, analyze, and report data on EMS; those data should include all of the elements of a national uniform data set and describe the nature of emergency medical services provided to children. Furthermore, it recommends that mechanisms be developed to link all data on a specific case, where those data are generated by separate parts of the EMS system. The committee believes that data collection must get under way. It suggests an initial set of data elements for prehospital and ED services that should become part of a broader uniform national data set for EMS-C. Finally, the committee advises that EMS-C agencies in federal and state government (proposed below) assume responsibility for determining how these activities should be organized and supported; at the federal level, the committee recommends that the federal center responsible for EMS-C develop guidelines for a national uniform data set on emergency medi- cal services for children. Research Research is needed to validate the clinical merit of care that is given, to identify better kinds of care, to devise better ways to deliver that care, and to understand the costs and benefits of the EMS and EMS-C systems now in place and toward which the nation should move. The committee recom- mends that research in emergency medical services for children be ex- panded and that priority attention be given to seven areas: clinical aspects of emergencies and emergency care; indices of severity of injury and, especially, severity of illness; patient outcomes and outcome mea- sures; costs; system organization, configuration, and operation; effec- tive approaches to education and training, including retraining and skill retention; and prevention. Other areas that warrant targeted research ef- forts include epidemiology of illness and injury, skills needed in prehospital care, and rehabilitation services. As with the earlier data-related recom- mendations, the committee believes that the proposed federal center must play a prominent role in supporting a comprehensive research agenda for EMS-C. Leadership at the Federal and State Levels The committee has by now clearly set forth its support for two goals: ensuring the development of high quality EMS-C as an integral component of existing EMS systems and ensuring strong links to providers of child health services. Although the committee's charge addresses only emer- gency care, its positions rest on the belief that society has a special obliga
SUMMARY 17 lion to attend to the health care needs of children. They depend on others for their care and have no independent political voice through which they can make their needs known. Children's issues have been overlooked in this field, and the committee wishes to see that oversight corrected. Agencies and Advisory Councils To provide leadership in efforts to improve EMS-C, the committee sets forth two pairs of recommendations regarding the establishment of EMS-C centers or agencies at the federal and state levels." Ensuring that children's emergency care needs receive adequate attention calls for action at the high- est levels of federal and state government by the Secretary of DHHS and by the governors. Specifically, the committee recommends that: Congress direct the Secretary of DHHS to establish a federal center or office to conduct, oversee, and coordinate activities related to planning and evaluation, research, and technical assistance in EMS-C; · Congress direct the Secretary to establish a national advisory council for this center; members should include representatives of rel- evant federal agencies, state and local governments, the health care community, and the public at large; · states establish a lead agency to identify specific needs in emer- gency medical services for children and to address the mechanisms ap- propriate to meeting those needs; and · state advisory councils be established for these agencies; mem- bers should include representatives of relevant state and local agencies, the health care community, and the public at large. The committee argues the case for these federal and state centers and advisory councils for EMS-C on six key grounds: (1) advancing an ethical imperative; (2) counterbalancing the weakness of children as a political force; (3) providing visibility for an important health service; (4) strength- ening partnerships across federal, state, and local levels of government; (5) improving organizational efficiency; and (6) improving economic efficiency and countering economic losses. The committee also concludes that the arguments for and strengths of these types of entities outweigh the drawbacks both in general and for EMS and EMS-C in particular. Because past experience suggests that children's 1In discussions about states, the committee assumes a total of 54 "state" entities namely, the 50 existing states, the District of Columbia, Puerto Rico, the Virgin Islands, and a com- bined area of American Samoa, Guam, and the Commonwealth of the Marianas. It uses the term "state" for simplicity of presentation.
18 EMERGENCY MEDICAL SERVICES FOR CHILDREN requirements will not be adequately represented without an identifiable in- stitutional voice, alternatives to establishing a center for EMS-C were deemed inadequate. The committee is confident that by starting at the highest levels with a public-private sector approach (which is inherent in the proposed advisory councils), efforts to ensure that children's emer~encv care needs are met will, at last' receive adequate attention. lo, , Me comrn~ttee~s charge to the proposed federal EMS-C center (pre- sented in some detail in Chapter 8) covers 11 elements that were judged to be critical to progress in this field: developing a national strategy for EMS- C, coordinating efforts throughout the federal government, disseminating information and providing for a clearinghouse function, improving access to care, underscoring medical illness as a special concern in EMS-C, assisting education and training efforts, collecting and analyzing data, supporting enhanced research efforts, creating incentives for state action, providing technical assistance, and encouraging regional coordination. The first eight elements presuppose a national perspective; the last three aim to foster state and local efforts. At the federal level, Congress and the Secretary of DHHS could assign responsibility for EMS-C to an existing agency or choose to give it to a newly created entity. Several models could be examined in drawing up plans for a federal EMS-C center. The committee recommends a fairly traditional federal agency arrangement, coupled with a national advisory council, but a hybrid approach to organizational structure and governance might be considered. Among the possible models are DHHS agencies for disease prevention and health promotion and for minority health, the two resource centers for EMS-C now supported by HRSA, two centers con- cerned with child abuse and neglect (one in DHHS, one in a state univer- sity), and an office concerned with juvenile justice in the Denartment of Justice. ~- -A At the state level, eight matters are paramount: . . . .. 1 planning state pro- grams; enhancing education and training; strengthening structural elements of the EMS-C system; collecting and analyzing data; improving access to care; broadening interstate cooperation; ensuring public accountability; and, in terms of implementation broadly conceived, taking political consider- ations and fiscal constraints into account. Each state will have a unique mix of opportunities and constraints-based on factors such as population, geography, culture, political system, economics, and health care policies and resources and each state a~encv must formulate Programs suited to its . . . specific circumstances. ~ ~ r - cat Thus, although the committee believes that lead agencies for the states are key to integrating EMS-C into EMS and in im- proving the outcomes of EMS-C, it does not present a single model for them. Advisory councils proposed by the committee offer the opportunity for
SUMMARY 19 a broad range of parties to participate in the development of EMS-C. The state bodies in particular should be able to accommodate the very diverse needs, resources, and organizational characteristics of individual states. The agenda for the advisory councils should include immediate concerns such as funding priorities as well as longer-term issues such as health care reform. Public accountability is essential and can be encouraged by requirements such as publication of annual reports that are widely disseminated. Funding To underwrite these efforts initially, the committee further recom- mends that Congress appropriate $30 million each year for five years (for a total of $150 million over the period) to support activities of the federal center and the state agencies related to EMS-C. An illustrative allocation of the $30 million per year might be: $1.5 million for direct operation of the federal center in DHHS; $1 million for data collection, analysis, and minimum data set activities; $~.5 million for technical assis- tance and clearinghouse tasks; and $2.5 million for extramural research. The remaining $23.5 million might be allocated to the 54 "states" according to some formula based partly on fixed costs and partly on population fac- tors. States and localities (e.g., counties, metropolitan areas), as well as organizations in the private sector, would be eligible to apply for federal funds for technical assistance, clearinghouse activities, research, and simi- lar functions financed directly through the national center. State agencies could establish policies for making some portion of their own federal dol- lars available to local communities or in-state private sector entities (in addition to whatever state funds such agencies might have available for these purposes). The committee sees the recommended level of support as the absolute minimum for development of an effective program. A token, underfunded EMS-C program cannot discharge its responsibilities satisfactorily; it might, instead, waste the resources that are provided, lead to a false sense of security about the state of EMS-C today and tomorrow, and be unable to demonstrate any meaningful effect on the planning and delivery of emer- gency care for children. A funding recommendation must, for the sake of concreteness and face validity, be specific. The committee recognizes, however, that on the typically rocky road of implementation, some details and desir- able (or not so desirable) aspects will emerge only as the program progresses. Thus, the recommended dollar figures above might well be revised, either upward or downward, over the proposed five-year funding period. A1- though to some these recommendations may seem costly in the face of stringent budget constraints at the federal and state levels, clearly in abso- lute terms this level of spending is not excessive for the goals set forth.
20 EMERGENCY MEDICAL SERVICES FOR CHILDREN LOOKING TO THE FUTURE Other important issues affecting EMS-C, including many of the con- cerns endemic to the entire health care sector in this country, remain unad- dressed by this committee. For example, a systematic assessment of ben- efits and costs of EMS-C is needed, but serious conceptual and practical questions remain unanswered Matters of health care reform' access to primary care, and pressures on emergency care facilities and providers are of considerable significance for EMS-C but lie beyond the scope of this committee's charge. Nevertheless, these issues form the backdrop against which the committee's recommendations will have to be played out and should not be overlooked. Issues of Benefits and Costs In an era of severe budget constraints at the national, state, county, and municipality levels, the difficulties of paying for programs such as EMS and EMS-C loom large. If such groups are to be persuaded to find the necessary funds, estimates of the costs of programs and the benefits ex- pected from them ought to be generated. The current dearth of information about the benefits, in terms of health outcomes, of EMS-C programs per se clearly hinders the development of quantitative estimates of cost-benefit or cost-effectiveness ratios. Costs and financing issues rank in significance with patient outcomes and benefits. Neither the public nor the private sector can be expected to handle the burden of rising costs alone. Hence, a partnership between the public and private sectors (such as the agency-plus-advisory-council struc- ture recommended by the committee) will be required. The committee believes that national and state advisory councils may well want to place cost issues high on their respective agendas-especially because reallocations of health sector dollars among competing needs may be likely in the near term. A Changing Health Care Environment The health care system within which EMS-C exists faces significant questions regarding its future shape and structure. Although EMS-C con- cerns are not likely to determine the answers to these questions, EMS-C will certainly be affected in important ways by the decisions that are made. Health Care Reform The growing move toward health care reform will generate intense de- bates about rising rates of expenditures and inadequate access to health care for millions. Significant reform efforts will require painful choices for
SUMMARY 21 many parties and trade-offs among several desirable objectives. It will also demand that a considerable array of difficult topics be competently ad- dressed: for example, who pays; what are the covered benefits; how univer- sal are coverage and access; how best should we reach special populations in need; how will we contain costs; how can we maintain and enhance the infrastructure for health care (e.g., the information and knowledge base, health personnel and facilities); and how can we maintain, if not improve, the quality of health care and the value received for our health care dollar. This committee takes the position that parties responsible for the future of EMS and EMS-C must become knowledgeable about technical aspects of health care reform proposals. The proposed national and state advisory councils might well be expected to monitor how the interests of EMS-C and EMS more generally are reflected in reform proposals. How (and how well) proposals attend to broader issues of health care for children must be of special concern for those interested in EMS-C. Special Challenges to EMS and EMS-C Regardless of the outcome of the health care reform process, EMS-C must contend with more immediate challenges that arise out of problems facing EMS and the larger health care community. EMS systems, particu- larly in major urban areas, face increasing demand for their services, often in circumstances in which emergency care resources are scarce or overbur- dened. In rural areas, many small hospitals have closed (200 between 1980 and 1988 alone), and prehospital providers face serving large regions with limited staff and equipment. Emergency care providers themselves are among the scarce resources in EMS. The loss of volunteer EMTs and paramedics, who are the only pro- viders of prehospital care in some localities, is a special concern for some EMS systems. Nursing shortages can contribute to problems in EDs and elsewhere in the continuum of care. Tensions associated with the demands of emergency care exacerbate the loss of providers of all types and the difficulties in replacing them. Hospitals, EDs, and EMS systems are facing concerns over the impact of statutory requirements for minimum levels of care and appropriateness of transfers of patients between facilities (the "anti-dumping" provisions of recent legislation). These legal standards have created various uncertain- ties, such as the level of service required before a patient can be discharged or transferred. For hospitals with comparatively minimal EDs or extremely overcrowded EDs, pressures for staffing and equipment (and consequent costs) may be intense. Thus, the net effect may prove to be a reduction in the health care resources available to the very patients whom the "anti- dumping" legislation was intended to help.
22 EMERGENCY MEDICAL SERVICES FOR CHILDREN Questions about the future of hospital EDs and the availability of pri- mary care for children are closely linked and of special concern for EMS-C. Because many children, particularly those from disadvantaged families but increasingly middle-class children, lack adequate access to primary care and preventive services, EDs are called on more and more to provide those services. The committee did not attempt (o reach ~ cones on whether Bids should assume wider responsibility for primary care, but it did agree on two points. First, ED caseloads are directly affected by practice patterns in primary care, so the future role of EDs cannot be determined in isolation. Second, a clear dilemma exists: In some locales, primary care provided in hospital EDs may permit EMS-C interests to thrive; in others, primary care may swamp ED resources and erode capacity to meet true emergency needs. In the short term at least, expanding the primary care system quickly or broadly enough to relieve burdens on hospital EDs will not be possible, and those EDs now under stress will doubtless continue to experience problems. Thus, the role of the ED in health care delivery in general and the implica- tions of that role for delivery of genuine emergency care should be ad- dressed explicitly in studies that may be done on the future of primary care, case management and managed care programs, trauma systems, and the American hospital. Moreover, as the role of EDs evolves, the ramifications for education and training of professionals who staff EDs will need to be better understood. FINAL THOUGHTS Attempts to ensure that children receive adequate emergency medical care are a recent development in the field of EMS. This committee has adopted the position that EMS-C efforts in the future must consider all the elements that constitute good emergency care and good health care gener- ally, working through channels in both the public and private sector. The needs of children must be more widely recognized and made a genuine priority for policymakers at national, state, and local levels, particularly those in a position to influence the future directions of EMS and EMS-C. The conclusions and recommendations of this IOM study committee are intended to foster increased public attention and action at the highest levels toward an EMS-C system for the 21st century in which all parties can be confident and all can be proud.
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24 EMERGENCY MEDICAL SERVICES FOR CHILDREN