APPENDIX F
END-OF-LIFE CARE IN EMERGENCY MEDICAL SERVICES FOR CHILDREN

Joseph L. Wright, M.D., M.P.H.,* Christina M.S. Johns, M.D.,and Jill G. Joseph, M.D., Ph.D.

OVERVIEW

End-of-life care in emergency medical services for children (EMSC) seems almost an oxymoron. The instinctive response and clinical objective for providers of EMSC is the preservation of life, sparing no expense or effort in the avoidance of death. However, death is an infrequent but inevitable part of providing care to acutely ill and injured children. Management of the issues and circumstances surrounding sudden and unexpected loss can be particularly challenging and is an underexplored area of EMSC.

This appendix is organized to address the issues germane to the emergency care environment through a contextual comparison and contrast of sudden, unanticipated loss with the more classically described palliative care model of anticipated loss associated with chronic or long-standing illness. This discussion is followed by an examination of the roles of the providers of EMSC vis-à-vis end-of-life issues with recommendations for

*  

Division of Government and Public Affairs, Children’s National Medical Center; George Washington University School of Medicine, Washington, D.C.; Office of the State Medical Director, Maryland Institute for Emergency Medical Services Systems, Baltimore.

†  

Division of Emergency Medicine and Trauma Services, Children’s National Medical Center; George Washington University School of Medicine, Washington, D.C.

‡  

Center for Health Services and Community Research, The Children’s Research Institute Children’s National Medical Center; George Washington University School of Medicine, Washington, D.C.



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APPENDIX F END-OF-LIFE CARE IN EMERGENCY MEDICAL SERVICES FOR CHILDREN Joseph L. Wright, M.D., M.P.H.,* Christina M.S. Johns, M.D.,†and Jill G. Joseph, M.D., Ph.D.‡ OVERVIEW End-of-life care in emergency medical services for children (EMSC) seems almost an oxymoron. The instinctive response and clinical objective for providers of EMSC is the preservation of life, sparing no expense or effort in the avoidance of death. However, death is an infrequent but inevitable part of providing care to acutely ill and injured children. Management of the issues and circumstances surrounding sudden and unexpected loss can be particularly challenging and is an underexplored area of EMSC. This appendix is organized to address the issues germane to the emergency care environment through a contextual comparison and contrast of sudden, unanticipated loss with the more classically described palliative care model of anticipated loss associated with chronic or long-standing illness. This discussion is followed by an examination of the roles of the providers of EMSC vis-à-vis end-of-life issues with recommendations for *   Division of Government and Public Affairs, Children’s National Medical Center; George Washington University School of Medicine, Washington, D.C.; Office of the State Medical Director, Maryland Institute for Emergency Medical Services Systems, Baltimore. †   Division of Emergency Medicine and Trauma Services, Children’s National Medical Center; George Washington University School of Medicine, Washington, D.C. ‡   Center for Health Services and Community Research, The Children’s Research Institute Children’s National Medical Center; George Washington University School of Medicine, Washington, D.C.

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research directions. However, first, a brief historical background and recent perspective are presented. HISTORY In 1966, a seminal treatise issued by the National Research Council identified trauma as “. . . the neglected disease of modern society.”1 The publication of this monograph ushered in support for the development of modern-day emergency medical services (EMS) and the idea that patients could benefit from coordinated systems of field triage and organized transport. These systems would not only facilitate rapid transport of ill and injured patients to hospital-based centers for definitive clinical care, but also include rehabilitation, prevention, and research as essential infrastructure elements. The early years of EMS development were focused primarily on field training and hospital coordination to form regionalized networks of care. The care of children in these systems was largely integrated into adult models using principles and approaches extrapolated from adult experience.2 Emergence of Emergency Medical Services for Children In the 1980s, the first subspecialty training programs in pediatric emergency medicine began in Philadelphia, Kansas City, and Washington, DC. Simultaneous to the emergence of these fellowship programs, Senator Daniel Inouye (D-HI), with the help of the president of the Hawaii Pediatric Society, Dr. Cal Sia, was instrumental in focusing congressional attention on the gaps in emergency care for children in this country. In 1984, federal legislation (P.L.-98-555) was passed establishing the Emergency Medical Services for Children program under the Health Resources and Services Administration of the Department of Health and Human Services.3 Over the past 18 years, the federal EMSC program has maintained a steady appropriation and successfully disseminated grant funding for program development in all 50 states and 6 territories. In accordance with the recommendations of the 1993 Institute of Medicine (IOM) report Emergency Medical Services for Children, the programmatic priorities have focused on four areas: (1) education and training; (2) equipment and supplies; (3) regulation and funding; and (4) evaluation and research.4 Recent Progress Summary of the high-priority topics for an EMSC research agenda emanating from the IOM report did not drill down to topics directly related to end-of-life care.5,6 However, the recommendation “psychosocial support for families of injured or sick children,” taken broadly, is certainly

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inclusive of the issues to be discussed here. A review of the most recently developed federal EMSC five-year plan reveals new objectives related to Critical Incident Stress Management, EMS involvement in the child fatality review process, and a revised objective addressing the special needs of children and families in disaster situations.7 Despite the absence of specifically articulated recommendations or objectives related to bereavement training or institutional preparedness for dealing with acute loss, federal EMSC, through a funding mechanism entitled Partnerships for Children, has successfully collaborated with the American Psychological Association and the National Association of Social Workers to make important contributions in this area. A recently published body of consensus reports and clinical guidelines in the areas of mental health needs and bereavement practices forms the most comprehensive evidence to date specific to EMSC and EMSC providers.8-11 This work establishes a foundation upon which meaningful data can be gathered and future research directions built. Of note, in the education and training arena, the American Academy of Pediatrics (AAP) has introduced a module entitled “Child and Family Interaction” as part of its new Pediatric Education for Prehospital Professionals (PEPP) course, and the latest version of the Pediatric Advanced Life Support (PALS) course has incorporated a new module entitled “Coping with the Death of a Child.”12,13 Also, the Committee on Pediatric Emergency Medicine of the AAP, in conjunction with the Pediatrics Committee of the American College of Emergency Physicians, recently issued an update of its policy statement, supported by a technical report, on the death of a child in the emergency department. In updating its recommendations, the AAP affirms a commitment to family-centered and culturally competent end-of-life care and places the onus of responsibility for organizing and coordinating the response to a child’s death on the emergency department (ED).14,15 ISSUES IN THE CARE OF CHILDREN DYING SUDDENLY AND UNEXPECTEDLY The following two vignettes represent actual cases managed at a tertiary care pediatric center and set the stage for the discussion to follow. The scenarios typify the mechanisms, consequential events, and emotions experienced by families and providers alike in the emergency medical services for children arena. Clinical Vignettes Case 1: On a warm summer day, the mother of a toddler and 6-year-old child is briefly distracted by a telephone call that she takes poolside in their backyard. When she turns around, the 19-month-old is face down in

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the shallow end of the pool and requires prolonged resuscitative efforts. Serial head computed tomography (CT) scans demonstrate profound hypoxic brain injury and the child progresses to brain death. Discussions in the intensive care unit (ICU) over the next 24 to 48 hours are complicated by the mother’s profound sense of guilt and her inability to participate in decisionmaking. Case 2: A 14-year-old boy is bicycling home from playing in the park and is struck by a car whose driver was apparently intoxicated. The child sustains life-threatening head and thoracic injuries. As his condition deteriorates, organ donation is discussed with the parents who perceive this as evidence that the medical team is “giving up” and would like to “experiment” on their child. These scenarios illustrate three important issues in the care of children who die as a result of sudden and unanticipated illness or injury: contextual issues, consistencies with anticipated deaths in children, and contrasts between sudden, unanticipated deaths and anticipated deaths in children. At the outset, we acknowledge a certain definitional breadth regarding the terms that are used in this appendix. Specifically, we use the term “parents” to refer to the caregivers of the critically ill and dying child. We recognize that family circumstances differ and that for some children this may be a grandparent, an older sibling, or foster mother. Similarly, we refer to “families” but understand this to mean those individuals who love and care for a child whatever their legal or biological relationship. Finally, we focus on death and dying but, as we acknowledge below, for many children there is no clear demarcation between the critical illness and dying. Indeed, one of the chief ambiguities confronted by parents is to understand the child’s current medical condition on the continuum between uncertain survival and certain death. Many of the comments here are more broadly applicable to the circumstances of any child who is unexpectedly critically ill or injured. Were we to improve care for the child dying in these circumstances we would actually improve the care of a much larger number of children who survive. Context Our society has focused only reluctantly on the death of children, and insofar as we have done so, a palliative care model is most often applied. Therefore, we begin this discussion by emphasizing the context in which it is undertaken: the epidemiologic realities of pediatric death. It is important

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to recognize that sudden and unanticipated death in children is not the exception, but rather the norm. Basic epidemiologic data clearly demonstrate this point.16 For children 1 to 4 years of age, at least 43 percent of deaths are due to unintentional causes, homicide, suicide, or brief unanticipated illness. This figure rises to 53.4 percent among children 5 to 14 years old and to 75.7 percent among those 15 to 24 years old.17 It could be argued that in infancy (children less than 1 year of age) virtually all deaths are unanticipated although some certainly are not sudden, and an additional burden of unanticipated illness occurs in children whose cause of death is attributed to chronic health conditions. That is, even for the child with a malignancy, the rapid development of overwhelming sepsis may be perceived by family members as entirely unanticipated. Thus, among the most important points to be made is that unlike the popular stereotype of childhood deaths in children with leukemia or cystic fibrosis, the majority of children who die do so due to acute processes, most often trauma related. While we recognize the importance to end-of-life issues of palliative care, if the majority of children are to experience “good” deaths and the needs of their family members are to be addressed, there must be broader recognition of the ways in which children most frequently die. We would also like to emphasize that while the statistics provided above are pertinent to deaths in children, the distress and bereavement discussed below are also found in the larger group of children who survive sudden and unanticipated life-threatening illness or injury.18 Whether the surviving child emerges cognitively and physically intact or variably disabled, family members, as well as the child, may experience long-term sequelae that need to be anticipated and, as possible, prevented or treated. Unanticipated critical illness or injury can profoundly disrupt the parental sense of caretaking, of secure attachment to the child, and of a predictable family future. For example, children who are critically injured, as well as their parents, experience posttraumatic stress disorder (PTSD)-like symptoms.19-22 These epidemiologic and medical considerations create a more complex context for pediatric deaths and dying than is often appreciated. First, the number and type of potentially involved personnel is larger and more diversified. Prehospital providers in EMS, fire and rescue, law enforcement, and public safety, as well as hospital-based providers in EDs, on surgical teams, and in ICUs may have important interactions with acutely dying children and their family members. Each will require appropriate training and resource availability to address the needs of these children and their families. Secondly, as discussed further below, parents confront uniquely difficult circumstances that will shape their ability to continue parenting and advocating for their dying child, as well as affecting the course of the predictably difficult bereavement. Finally, the opportunities for intervention to improve

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care of the child who dies unexpectedly may be constrained, both by the foreshortened time frame during which the dying child may be cared for and by the unanticipated nature of the illness or injury. Taken together, this suggests that particular attention needs to be paid to the needs of children with sudden and unanticipated deaths and to the needs of their family members. Consistencies with Anticipated Deaths in Children We also recognize, however, that the needs of the dying child and family have important similarities whether the death is long anticipated or entirely unexpected. This continuity between issues recognized in traditional palliative care and the circumstances of families we are discussing should be appreciated because it can strengthen care for all children who die. In common with others, we recognize the needs of the dying child to include appropriate medical and psychosocial care with particular attention to symptom management, notably adequate pain relief. Appropriate support, recognition of autonomy, and information must be provided as appropriate to the child’s cultural background, development, psychological state, and medical condition. For family members of any critically ill child, whether due to an anticipated or unanticipated etiology, we recognize the shared need for culturally appropriate and family-focused care that conveys fundamental respect and commitment to shared decisionmaking with the parent. More specifically, all dying children and their families require appropriate (1) facilities, (2) information, (3) support, and (4) involvement in care and decisionmaking. Each of these is discussed briefly here as essential consistencies across all pediatric deaths. Facilities Families of dying children need facilities that give them the space and time that they need to be with their child, to have privacy, to include supportive friends and family, and to grieve as they see fit. Also, basic individual needs such as rest, nutrition, and hygiene become secondary priorities for the family in a pre-bereavement state, and institutional accommodations to assist families in addressing these needs become extremely important. Information They also need information that is accurate, consistent, and expressed in language they can understand.23 This information needs to be responsive

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to their questions and concerns, as well as raising issues of which they may not be aware.24,25,26 This information exchange may include family members or friends who will help the family sort through what they are hearing and what they want to ask. While “information” emphasizes content, there is also a need to be attentive to the nuances of “communication,” or the process by which information is exchanged.27,28 As emphasized above, all family members of critically ill or dying children need to feel respected and valued. Communication should ideally empower and strengthen their role as parents, rather than marginalizing them or making them feel outside the circle of those caring for their child. Nonverbal details such as eye contact and body language are but the tangible means by which these values are often expressed. Support In parallel with communication, parents of dying or critically ill children need support. Whenever possible, this should be provided by those who know the family best and are chosen by the family to be present during this difficult time.29 On the other hand, the medical context may be unfamiliar or frankly uncomfortable for the family pastor or the child’s grandmother. There is a well-recognized and important role for members of the care team that include social workers, child-life workers, chaplains, and the nurses and physicians caring for the child. Involvement in Care and Decisionmaking Each of these considerations (facilities, information, and support) is important both in its own right and in so far as these are methods for the appropriate involvement of parents in care and decisionmaking. No “rule” can adequately describe how families might best maintain and express their relationship to their dying child. Nonetheless, it is essential for those caring for the child to support the parents’ self-definition as committed, compassionate caretakers through and beyond the experience of the child’s death.30,31,32 Parents remain parents. The death of a child only alters this relationship but does not end it. Contrasts Between Sudden, Unanticipated Deaths and Anticipated Deaths in Children Having noted issues that provide continuity between anticipated and unanticipated deaths of children, we now focus on special issues in providing care to the child who dies unexpectedly. As an important starting point, we need to recognize the intense shock and distress of parents who but

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moments or hours earlier had a healthy child whose future seemed unquestionably assured. This intense emotional arousal quickly includes apprehension and fear, as the severity of the child’s condition becomes apparent. In many cases, whether rationally or not, this intense distress will be coupled with a sense of guilt and responsibility. Concerned family members and friends will need to be informed, some summoned for the support they can provide and others held at bay by the distraught parents. Certainly in the first hours after the illness or injury, parents may be relatively isolated as well as overwhelmed. In this context of intense emotional reactions and potential isolation, parents are now confronting two important tasks: building a relationship with the medical care team and developing the required information to understand the child’s care and prognosis. Dealing with physicians they have never met, most frequently at a facility they have never visited, parents are often introduced to a wide and bewildering array of health care providers. The medical caregivers typically represent a variety of levels of individuals from diverse services: nurses, respiratory therapists, technicians, social workers, physicians, surgeons, residents, fellows, nursing clerks, admission personnel, and chaplains. Depending on the complexity of the medical management issues, team members may disagree among themselves regarding the likely severity of the child’s condition or the prognosis; there may be inconsistent information about optimal medical and surgical management.33,34 Furthermore, depending on the circumstances of the facility and the child’s need for operative or other procedures, the parents may not be able to see their child for an extended period of time. When they do, the child is often unlikely to be able to speak or even to recognize them and may be seriously disfigured as well as heavily instrumented with what parents often refer to as “all those tubes.” The fundamentals of building a relationship to the medical team, of developing trust in its judgment and decisionmaking, and communicating together are extremely problematic in this context. Additionally, parents who have little or no medical background and who are distraught will now be rapidly introduced to complexities such as CT scans, electrolyte results, chest tube drainage, and intracranial pressure monitoring in order to answer their simple question, “How is she doing?” As if these difficulties were not problematic enough, the pace of the child’s death is often considerably foreshortened, so that reactions must be unreasonably accelerated. Some children die in the field, others never leave the ED, most will be admitted to the intensive care unit. In a period of hours or days, the parents will need to progress from their ordinary life to a death vigil. They are likely to be asked to make decisions or at least participate in decisions about their child’s care, and about the child’s death. Are life supports to be removed, will care be limited, will organ donation be ap-

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proved, do they want to be present for the last moments, would they want to leave if the child needed to be “coded” (i.e., acutely resuscitated)?35,36 The questions are multiple and the answers often complex. Relationships to the medical team may be tentative, and confidence in the ability to understand the issues insecure. Grief under these circumstances can be totally debilitating and incapacitating. This is the context in which parents experience their last hours with a dying child. Providers of Emergency Medical Services for Children and End-of-Life Issues The sudden death of a child is a tragic event for both families and health professionals. The unexpected nature of the precipitating event necessarily engages a wide range of professionals who can potentially become involved in care of the child from response in the field, through transport to the emergency department, to management in the intensive care unit or operating room. Death may occur anywhere along the care continuum, with families acutely encountering individuals with differing backgrounds, training, and exposure to this critical aspect of a child’s care. It is important to understand the differences in scope of practice and training of emergency and acute care providers, all of whom can potentially provide invaluable services to a grieving family. Prehospital Providers While the majority of study on end-of-life care centers on hospital-based practitioners, the prehospital providers play a pivotal role. In the prehospital arena, first responders typically include fire and rescue and EMS personnel who can be grouped into two different categories according to level of training. Firefighters and emergency medical technicians (EMTs) are usually basic life support (BLS) providers. They are trained in basic resuscitation and life support with few procedural skills and very few hours devoted to pediatrics in the training curriculum.37 Advanced life support (ALS) providers are paramedics (EMT-Ps) who have advanced technical and decisionmaking skills yet who also have little training in pediatrics.38,39 ALS providers are licensed to administer a variety of medicines and are trained to manage patients of all ages in respiratory or cardiac arrest. Both ALS and BLS providers encounter pediatric deaths in the field and are charged with caring for families in the very early stages of loss.40 It is estimated that one out of every ten field transports in EMS is a pediatric transport, and of those, one out of every ten pediatric transports will truly be a sick child in need of prehospital intervention.41 Clearly, pediatric death in the field is a relatively uncommon event; however, the responding

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EMS provider frequently has the first and lasting contact with the family. In rural communities, where EMS are typically organized as local volunteer systems, it would not be unusual for providers to be responding to calls involving neighbors, family friends, and relatives. There has been a paucity of research on EMS providers’ experience and training regarding this topic, but from survey data it is clear that providers do not feel that they receive adequate preparation for end-of-life issues in the circumstances of sudden or unexpected death.42 According to national guidelines, the most highly skilled ALS providers receive only 6–30 hours of pediatric training, and the majority receive no training at all on any aspect of end-of-life care.43 EMS providers report that they are uncomfortable with this weighty responsibility and indicate that they desire more education and training by their peers in the form of lectures, videos, and roleplaying to prepare them better.44 Future research directives should include the critical examination of the structural context of the death of a child in the field and the preparedness of those providing care. This may take the form of assessment of educational initiatives for EMS providers on this topic or other more widespread retrospective reviews of EMS participation in pediatric death. There are certain instances in some jurisdictions where the EMS provider may in fact declare death at the scene and notify next of kin without the presence of other support professionals for the family.45,46 The patient is not transported to the hospital, and there is no established framework of care for the family in this scenario. Many providers volunteer in the community in which they live, and consequently their patients are likely to be known on a personal level. This can be both helpful and difficult. Oftentimes it is easier for an individual known to the family to deliver the news of the child’s death, but this can also be difficult for the provider due to feelings of guilt or fear that the family will “blame” the provider for not saving the child. Stress on the provider is enormous, and only recently has there been widespread integration of Critical Incident Stress Management (CISM) initiatives to ensure that EMS providers can work through their own feelings of despair, guilt, and anger.47,48,49 There is much opinion but virtually no evidence regarding the efficacy of CISM.50-53 More work needs to be done to better understand the contribution of CISM and how best to optimize its use for on-scene providers. Emergency Department Personnel If a patient is transported to an ED and death occurs there, a larger matrix of professionals is in place to provide support to the family and to the rest of the staff. Codified bereavement plans have been written in which doctors, nurses, social workers, and in some cases, clergy all work together

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to ensure that such a tragic event can be managed as smoothly as possible. What is clear from published data is that a well-handled counseling session with family members of the deceased can have a dramatic impact on that family’s grieving process and ultimate recovery and coping.54-57 There is still, however, a growing need for further understanding of the natural history of acute loss bereavement across the broad spectrum of cultural and ethnic diversity in this country. Future research needs to include cultural sensitivity as a principal outcome measure in investigations involving death management. When a patient in extremis is transported to the ED, often it is not the nursing or physician staff who first greets the patient’s family. The patient is typically brought directly to the resuscitation bay where medical care continues and the family is greeted by the ED social worker, a clergy member, or patient advocate. Most EDs have a “quiet room,” or similar private area removed from the rest of the activity and fast pace. The social worker or equivalent then remains with the family and acts as a liaison to the rest of the staff, keeping the family up-to-date with clinical events and helping to prepare the family for the death notification process. This may include making telephone calls to other family members and providing general comfort and support. Current bereavement care guidelines for so-cial workers include encouraging family members to talk about the patient and the events that led to the child’s being brought to the ED, assessing the family’s strengths and weaknesses, and explaining the basic roles of the various team members. If there is a family presence policy, the social worker also prepares the family for entering the resuscitation bay.58-61 After death notification occurs, this individual is then charged with managing the aftermath, from reassuring the family that everything possible was done to save the child to explaining autopsy and funeral procedures. This professional is typically the one person who will remain with the family for the duration of its stay in the ED. Families are encouraged to go see their deceased child, and she or he typically accompanies the family into the resuscitation bay. Once there, family members are encouraged to hold the child’s hand, comb the child’s hair, or in the case of an infant death, give the baby one last bath. All these suggestions are offered in accordance with local medical examiner procedures. Many hospitals have parental kits with plastic molds for an imprint of the child’s hands and/or feet and a ziplock bag to store a lock of the child’s hair. The social worker typically sees that these steps are completed, and parents surveyed months and years after their child’s death have found these small mementos helpful in attaining closure of the tragic event.62 The social worker or equivalent professional ultimately should let the family decide when to leave and provide them with follow-up telephone numbers if they have questions in the future. In some instances, the social

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worker will also contact the family at designated intervals after the child’s death again to offer support to and connection with the family. While there has been much written on the theoretical components of the bereavement process in the social work literature and elsewhere, there is little in the way of evidence-based information on the efficacy of such programs. Emergency department nurses and physicians must bridge the difficult gap between acting as the emotionally detached clinical decisionmakers and the emotionally charged messengers of the actual news of death to the family. The relationship with the family is a difficult one because the first meeting is typically the death notification conference. Physicians receive very little training in medical school and residency on the appropriate manner in which to inform family of a loved one’s death and describe themselves as ill at ease with their ability to do so.63,64,65 Some residency training programs are instituting multidisciplinary educational techniques designed to increase physicians’ comfort and effectiveness with this difficult part of practice. The methodology of one such type of program includes role playing with objective, standardized “family members,” in which residents are given a scenario where they must inform the “family” of a loved one’s death and then manage its questions and emotions. They are taught the importance of using the words “dead, death, and died.” They learn how to react to hostile, stoic, and grief-stricken parents, and are evaluated through direct feedback from the standardized family members. Residents report that these sessions are instrumental in increasing their confidence and sense of preparedness for this eventuality.66,67,68 It must be noted that these types of educational programs have only been introduced relatively recently and were therefore not a part of the postgraduate curricula of the majority of practicing physicians. It is also notable that most of these educational programs have been aimed primarily at adult internal medicine and emergency medicine residents. Clearly, more research attention needs to be paid to the evaluation of these programs and how they may be beneficial, particularly as families become increasingly present during resuscitation. Emergency nurses also play an important role, since much of their training emphasizes family-centered care.69 In some instances, nurses share the social worker’s role as described above and may be the best qualified to explain the clinical events to the family in understandable terms.70 Pediatric nurses can be particularly instrumental in helping siblings of the deceased child, because they have some understanding of cognitive developmental stages and can help a child of any age understand what death really means.71 While this facilitation can be difficult in the ED due to time constraints and logistic pressures, the pediatric intensive care unit (PICU) nurse is in a more optimal position to care for family members as he or she

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has often had more time to observe the family dynamic and develop a relationship with family members. Pediatric Intensive Care Unit Staff When an unexpected death occurs in the PICU, the issues can be potentially more complicated for several reasons. First, the family may have developed a “glimmer of hope” if the child has survived the resuscitation bay and consequently may have false expectations of outcome. Second, difficult ethical issues may arise surrounding the issues of brain death and withdrawal of support.72 It is important for all members of the staff to keep the family abreast of all clinical details and to meet regularly over the course of hours and, in some instances, days to talk about these issues and to prepare the family for potentially difficult decisions. Some hospitals have ethics committees that can guide staff as they grapple with complex cases. In addition, the developing presence of hospital-based palliative care consultation teams can be a valuable resource in this setting. 73 In the PICU, families do have more opportunity to develop a relationship with staff, and it is important that the minimum number of individuals feasible be assigned to the patient. In this way, the family will have, as much as possible, a defined number of staff with whom to interact.74 Typical “rules” in the PICU—for example, number of visitors and hours of visitation—are frequently stretched at the end of life. In cases of withdrawal of support, families are allowed whenever they desire to be at the bedside and to exercise, within reason, whatever rituals they desire. Staff are taught to respect these wishes and, if they feel comfortable doing so, to participate with the family if requested. Training in end-of-life care for PICU staff is scant and similar to that of ED personnel. There may be individualized in-service presentations at certain centers, but the formal training that nurses and physicians receive, if any, is in undergraduate professional or postgraduate training and not specific to the ICU environment. The principles that apply to sudden and unexpected death in the PICU are similar to those that apply in the ED.75 Other Out-of-Hospital and Community-Based Professionals In most jurisdictions, the sudden and unexpected death of a child occurring in the field or in the emergency department is considered a coroner’s case requiring an autopsy by the local medical examiner in the jurisdiction of death pronouncement. In cases involving pediatric trauma, for instance, it would not be unusual for the victim to be transported to a facility well outside the local community in a regionalized system of care. The family may not be present at the receiving facility at the time of death, and early

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loss and bereavement care may actually be shifted to the medical examiner’s office. Therefore, when death notification occurs, it is important for prehospital or hospital-based providers to let families know that the coroner process is required by law and that funeral arrangements can be made only after the case has been released by the medical examiner. In the wake of increasing media attention to youth violence, the global disaster of September 11, 2001, and other mechanisms of sudden death that may involve children and adolescents, schools and communities are forced to face the issues of unexpected loss head on. Crisis and grief counselors with specific training have been routinely brought in to schools to help students and families cope with loss. It is uncertain as to how well survivors are served by community-based bereavement and mental health services, but increased media exposure to the events of a high-profile and/or catastrophic acute loss accentuates the need for appropriately trained individuals and support personnel to be available at a community level. SUMMARY AND RESEARCH DIRECTIONS Regardless of provider type, from first responder in the field to attending physician in the ED or PICU, there appears to be a lack of decisive evidence regarding how well families of children who die are served, and there is clearly a need for more formal training for all staff at all levels. While the subject matter is certainly a difficult one to study, the ultimate outcome for the families is certainly influenced by a well-organized, managed death and bereavement process. In the interest of providing a solid continuum of care, a systemic commitment must be made to the education of those who must interface with the family of a child who dies and to the subsequent evaluation and improvement of emerging educational programs and existing services. Our discussion has been framed around what historical data are available and what new information is being developed. We have made reference throughout the manuscript to those areas of end-of-life care in EMSC in need of investigation and evaluation. Below are several research ideas framed around an important question and categorized by topic. Bereavement What is the association of acute, sudden, or unexpected loss with the development of posttraumatic stress disorder? In the context of acute and unexpected loss the bereavement process has been hypothesized to be associated with the development of symptoms not dissimilar from those of PTSD. Pilot work in this area suggests that nearly 30 percent of family members who have experienced the acute loss of a child can go on to

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exhibit PTSD symptomatology.18 Research to characterize and elucidate this relationship is necessary in order that specific approaches and interventions can be developed and tailored when the route of loss is sudden and unexpected. What is the impact on the bereavement process of parental presence during the attempted resuscitation of a dying child? There have been several institutional studies addressing the issue of family presence in the resuscitation bay.36,60,63 Despite a paucity of conclusive evidence, there is a growing trend towards encouraging parental presence not only during resuscitation in the emergency department, but during critical care procedures as well. The impact of this practice on parents, their perceptions, and their long-term coping has not been elucidated and needs to be addressed as a research issue. Critical Incident Stress Management How does Critical Incident Stress Management affect emergency care providers in the short and long term? What are the important outcomes to evaluate? CISM is the most widely used model of acute psychological support of emergency medical services and other public safety personnel.11,48,50 CISM has been institutionalized as a formal crisis intervention methodology for both large-scale and individual loss in many fire and rescue and EMS services across the country. Yet there is a paucity of evidenced-based information about the short-term and, importantly, the long-term efficacy of CISM. Useful outcome measures need to be identified and qualitative instruments for their evaluation need to be developed.47 Clinical Research—Resuscitation What are the predictors of mortality during resuscitation in the prehospital and emergency department arenas? Is it beneficial to exercise extraordinary interventions in the resuscitation of children who have experienced prolonged hypoxic–ischemic injury? There is a modest evidence-based literature addressing the effectiveness of high-dose epinephrine (HDE) as a treatment modality for children who have suffered cardiopulmonary arrest (CPA).76-79 The data show little evidence to support benefit from the return of spontaneous circulation (ROSC) in children resuscitated using HDE. Poor and irreversible neurologic outcomes are the overwhelming norm. Resuscitating the heart in an otherwise brain-dead child can generate a cascade of unalterable events for families and providers including transport to a pediatric intensive care unit and decisionmaking about issues such as withdrawal of support, declaration of brain death, and organ donation. Conversely, the time window that a short PICU stay may afford may posi-

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tively impact the bereavement process for families. A critical examination of this issue is warranted. REFERENCES 1.National Committee of Trauma and Committee of Shock. Accidental Death and Disability: The Neglected Disease of Modern Society. Washington, DC: National Academy of Sciences/National Research Council, 1966. 2.Wright J, Klein B. Regionalized pediatric trauma care systems. Clinical Pediatric Emergency Medicine2001;2:3–12. 3.Wheeler DS. Emergency medical services for children: A general pediatrician’s perspective. Curr Probl Pediatr1999;29:225–241. 4.Institute of Medicine, Committee on Pediatric Emergency Medical Services. In: Durch JS, Lohr KN (eds): Emergency Medical Services for Children. Washington, DC: National Academy Press, 1993. 5.Jaffe DM. Research in emergency medical services for children. Pediatrics1995; 96(suppl):191–194. 6.Seidel JS, Henderson D, Tittle Set al.Priorities for research in emergency medical services for children: Results of a consensus conference. Pediatrics1999;33:206–210. 7.U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. 5 Year Plan: Emergency Medical Services for Children, 2001–2005.Washington, DC: Emergency Medical Services for Children National Resource Center, 2001. 8.Brown J, Burr B, Coleman M, Horowitz L, Mayer D, Thompson P, Wright-Johnson C, Wright J. Mental health treatment for self-injurious behaviors: Clinical practice guidelines for children and adolescents in the emergency department. National Academies of Practice Forum1999;1:35–40. 9.Lipton H. Emotional reactions to the sudden death of a child: The challenge to emergency care providers. Int J Emerg Ment Health2000;2:181–187. 10.Lipton H, Coleman M. Bereavement practice guidelines for health professionals in the emergency department. Int J Emerg Ment Health2000;2:19–31. 11.Lipton H, Everly GS. Mental health needs for providers of emergency medical services for children: A report of a consensus panel. Prehosp Emerg Care2002;6:15–21. 12.American Academy of Pediatrics. Pediatric Education for Prehospital Professionals. Sudbury, MA, Jones and Bartlett, 2000. 13.American Heart Association. Textbook of Pediatric Advanced Life Support, Dallas: American Heart Association, 2001. 14.American Academy of Pediatrics, Committee on Pediatric Emergency Medicine and the Pediatrics Committee of the American College of Emergency Physicians. Death of a Child in the Emergency Department (Policy Statement). Pediatrics2002;110:839–840. 15.American Academy of Pediatrics, Committee on Pediatric Emergency Medicine. Death of a Child in the Emergency Department (Policy Statement). Pediatrics1994;93:861– 862. 16.Hoyert DL, Freedman MA, Strobino DM, Guyer B. Annual summary of vital statistics: 2000. Pediatrics2001;108:1241–1255. 17.Arialdi MM, Smith BL. Deaths: Preliminary Data for 2000.National Vital Statistics Report vol. 49, no.12. Hyattsville, MD: National Center for Health Statistics, 2001. 18.Peebles-Kleiger MJ. Pediatric and neonatal intensive care hospitalization as traumatic stressor: Implications for intervention. Bull Menninger Clin2000;64:257–280.

OCR for page 580
19.Perry BD, Azad I. Posttraumatic stress disorders in children and adolescents. Curr Opin Pediatr1999;11:310–316. 20.Murphy SA, Braun T, Tillery L, Cain KC, Johnson LC, Beaton RD. PTSD among bereaved parents following the violent deaths of their 12- to 28-year-old children: A longitudinal prospective analysis. Journal of Traumatic Stress1999;1:273–291. 21.Dyregrov A, Dyregrov K. Long-term impact of sudden infant death: a 12- to 15-year follow-up.Death Stud1999;23:635–661. 22.Huckabay LM, Tilem-Kessler D. Patterns of parental stress in PICU emergency admission. Dimens Crit Care Nurs1999;18:36–42. 23.Buckman R. How to Break Bad News: A Guide for Health Care Professionals.Baltimore, MD: Johns Hopkins University Press, 1992: 65–97. 24.Greenberg LW, Ochsenschlager D, O’Donnell R, Mastraserio J, Cohen GJ. Communicating bad news. Pediatrics. 1999;103:1210–1217. 25.Vincent, VJ. Information in the ICU. Intensive Care Med1998;24:1241–1246. 26.Todres ID, Earle M Jr, Jellinek MS. Enhancing communication.Pediatr Clin North Am 1994;41:1395–1404. 27.Dear S. Breaking bad news: Caring for the family. Nurs Stand1995;10:31–33. 28.Dubin WR, Sarnoff JR. Sudden unexpected death: Intervention with the survivors. Ann Emerg Med1986;15:54–57. 29.Oliver RC, Sturtevant JP, Scheetz JP, Fallat ME. Beneficial effects of a hospital bereavement intervention program after traumatic childhood death. Journal of Trauma, Injury, Infection, and Critical Care2001;50:440–448. 30.Tomlinson PS, Swiggum P, Harbaugh BL. Identification of a nurse-family intervention site to decrease health-related family boundary ambiguity in PICU. Issues Compr Pediatr Nurs1999;22:27–47. 31.Meert KL, Thurston CS, Sarnaik. End-of-life decision-making and satisfaction with care: Parental perspectives. Pediatr Crit Care Med2000;1:179–185. 32.Meert KL, Thurston CS, Thomas R. Parental coping and bereavement outcome after the death of a child in the pediatric intensive care unit. Pediatr Crit Care Med2001;2:324– 328. 33.Bartel DA, Engler AJ, Natale JE, Misra V, Lewin AB, Joseph JG. Working with families of suddenly and critically ill children: Physician experiences. Arch Pediatr Adolesc Med 2000;154:1127–1133. 34.Shiminski-Maher T. Physician–patient–parent communication problems. Pediatr Neurosurg.1993;19:104–108. 35.Walker JA, McGrath PJ, Macdonald NE, Wells G, Petrusic W, Nolan BE. Parental attitudes toward pediatric organ donation: A survey. CMAJ1990;142:1383–1387. 36.Bioe, ET, Moore GP, Brummett C, Nelson DR. Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 100 parents. Ann Emerg Med1999;34:70–74. 37.Infants and children. In: McSwain N et al. (ed): The basic EMT: Comprehensive prehospital patient care,2nd ed, St. Louis, MO: Mosby, 2001. 38.Pediatrics. In: Sanders M et al. (ed): Paramedic Textbook,2nd ed, St. Louis, MO: Mosby, 2001. 39.Gausche M, Seidel JS: Out-of-hospital care of pediatric patients. Pediatr Clin North Am 1999;46:1305–1327, 1999. 40.Gausche Met al.Pediatric deaths and emergency medical service (EMS) in urban and rural areas. Ped Emerg Care1989;5:158–162. 41.Suruda A, Vernon DD, Reading Jet al.Prehospital emergency medical services: A population-based study of pediatric utilization. Inj Prev1999;5:294–297.

OCR for page 580
42.Glaeser Pet al.Survey of nationally registered emergency medical services providers: Pediatric education. Ann Emerg Med2000;36:33–38. 43.Gausche-Hill M. Pediatric continuing education for out-of-hospital providers: Is it time to mandate review of pediatric knowledge and skills?Ann Emerg Med2000;36:72–74. 44.Johns C, Chamberlain J, Teach S, Wright J. EMS provider training and experience with pediatric death. Pediatric Research2000;47:110A. 45.Maryland Institute for Emergency Medical Services Systems (MIEMSS): The Maryland Medical Protocols for EMS Providers. Baltimore, MD: MIEMSS, 2002. 46.Pepe PE, Swor RA, Ornato JP, Racht EM, Blanton DM, Griswell JK, Blackwell T, Dunford J. Prehosp Emerg Care2001;5:79–87. 47.Deahl MP, Srinivasan M, Jones N, Neblett C, Jolly A. Evaluating psychological debriefing: Are we measuring the right outcomes?J Trauma Stress2001;14:527–529. 48.Everly GS, Boyle SH. Critical incident stress debriefing: A meta-analysis. Int J Emerg Ment Health1999;1:105–108. 49.Oster NS, Doyle CJ. Critical incident stress and challenges to the emergency workplace. Emerg Med Clin North Am2000;18:339–353. 50.Mitchell JT, Everly GS. The scientific evidence for critical incident stress management. J Emerg Med Svc1997;22:86–93. 51.Hammond J, Brooks J. The World Trade Center attacks: Helping the helpers: The role of CISM. Crit Care2001;5:313–317. 52.Bach KJ. Critical incident stress management for care providers in the pediatric emergency department. Crit Care Nurs1992;12:78–83. 53.Mitchell JT. Stress: The history, status, and future of critical incident stress debriefing. J Emerg Med Svcs1988;13:46–52. 54.Ahrens W, Hart R, Maruyama N. Pediatric death: Managing the aftermath in the emergency department. J Emerg Med1997;15(5):601–603. 55.Walters DT, Tupin JP. Family grief in the emergency department. Emerg Med Clin N Amer.1991; 9:189–206. 56.Dubin WR, Sarnoff JR. Sudden unexpected death: Intervention with the survivors. Ann Emerg Med. 1986;15:54–57. 57.Holland L, Rogich LE. Dealing with grief in the ER. Health Soc Wk1980;5:12–17. 58.Adams S. Should relatives be allowed to watch resuscitation?BMJ.1994;308:1687– 1692. 59.Clark AP, Calvin AO, Meyers TA, Eichorn DJ, Guzzetta CE. Family presence during cardiopulmonary resuscitation and invasive procedures: A research-based intervention. Crit Care Nurs Clin North Am2001;13:569–575. 60.Guzzetta CE, Taliaferro E, Proehl JA. Family presence during invasive procedures and resuscitation. J Trauma2000;49:1157–1159. 61.Meyers TA, Eichorn DJ, Guzzetta CE. Do families want to be present during CPR? A retrospective survey. J Emerg Nurs1998;24:400–405. 62.Wells PJ. Preparing for sudden death: Social work in the emergency room. Soc Work 1993;38:339–342. 63.Schmidt TA, Tolle SW. Emergency physicians’ responses to families following patient death. Ann Emerg Med1990;19:125–128. 64.Schultz CA. Sudden death crisis: Prehospital and in the emergency department. J Emerg Nurs1980;6:46. 65.Tolle SW, Elliot DL, Hickman DH. Physician attitudes and practices at the time of patient death. Arch Int Med1984;144:2389. 66.Pollack M. Educating new resident physicians in death notification. Acad Med1999; 74:721.

OCR for page 580
67.Quill T, Townsend P. Bad news: Delivery, dialogue, and dilemmas. Arch Int Med 1991;151:463–468. 68.Tolle SW, Cooney TG, Hickman DH. A program to teach residents humanistic skills for notifying survivors of a patient’s death. Acad Med1989;64:505–506. 69.Fond KI. Dealing with death and dying through family centered care. Nurs Clin North Am1972;7:53–64. 70.Schearer R, Davidhizar R. Shock and disbelief: Supporting parents who experience the sudden death of their child. Penn Nurs1993;48:14–15. 71.Resch EL, Laufer MD. Sibling grief: Helping children cope with the death of a sibling. Emph Nurs1989;3:34–42. 72.Frader J, Thompson A. Ethical issues in the pediatric intensive care unit. Ped Clin North Am1994;41:1405–1421. 73.Block SD. Helping the clinician cope with death in the ICU. In: Curtis JR, Rubenfeld GD (eds): Managing Death in the ICU. New York: Oxford University Press, 2001;183–191. 74.Crain N, Dalton HJ, Slonim AD. End-of-life care for children: Bridging the gaps. Crit Care Med2001;29:695–696. 75.Campbell ML. Breaking bad news to patients. JAMA.1994;271:1052. 76.Patterson MD. Resuscitation update for the pediatrician. Pediatr Clin North Amer1999; 46:1285–1303. 77.Young KD, Seidel JS. Pediatric cardiopulmonary resuscitation: A collective review. Annals of Emerg Med1999;33:195–205. 78.Dieckmann RA, Vardis R. High-dose epinephrine in pediatric out-of-hospital cardiopulmonary arrest. Pediatrics1995;95:901–913. 79.Callaham M, Madsen CD, Barton CWet al.A randomized trial of high-dose epinephrine and norepinephrine vs. standard-dose epinephrine in prehospital cardiac arrest. JAMA1992;268:2667–2672.