technical report death of a child in the emergency department malley, md… · emergency medicine...

TECHNICAL REPORT

Death of a Child in the Emergency Department

abstractThe death of a child in the emergency department (ED) is one of themost challenging problems facing ED clinicians. This revised technicalreport and accompanying policy statement reaffirm principles of patient-and family-centered care. Recent literature is examined regarding familypresence, termination of resuscitation, bereavement responsibilities of EDclinicians, support of child fatality review efforts, and other issues inher-ent in caring for the patient, family, and staff when a child dies in the ED.Appendices are provided that offer an approach to bereavement activitiesin the ED, carrying out forensic responsibilities while providing compas-sionate care, communicating the news of the death of a child in the acutesetting, providing a closing ritual at the time of terminating resuscitationefforts, and managing the child with a terminal condition who presentsnear death in the ED. Pediatrics 2014;134:e313–e330

INTRODUCTION

When emergency clinicians are faced with an imminent child death inthe emergency department (ED), they must carry out many complextasks. They must treat a patient experiencing an acute and evolvingmedical situation, establish a compassionate relationship with familythey have likely never met before, and support and work in teamfashion with their colleagues as they acknowledge the human limi-tations to remedy a medical crisis. Many of the clinical, operational,legal, ethical, and spiritual layers to this complex care are discussedin this report and are listed in Table 1. The infrequency of these eventsand the magnitude of the tragedy combine to make the death of a childin the ED one of the most challenging problems facing emergencyhealth care providers.

Despite the relative infrequency of these events, there is considerablediversity in the clinical presentation of the death of a child in the ED. Inthis technical report, child death in the ED is considered broadly,encompassing acute unanticipated trauma or illness, stillbirth or ex-treme preterm birth at the margin of viability, the child declared dead onarrival, the child who dies shortly after passing through the ED, and eventhe child with a known life span–limiting condition for whom the EDbecomes the location of end-of-life care.

This technical report builds on the original technical report publishedin Pediatrics in 20051 in support of the 2002 joint statement of theAmerican Academy of Pediatrics (AAP) and American College of Emer-gency Physicians (ACEP)2 and a companion article published in Annals of

Patricia O’Malley, MD, Isabel Barata, MD, Sally Snow, RN,AMERICAN ACADEMY OF PEDIATRICS Committee on PediatricEmergency Medicine, AMERICAN COLLEGE OF EMERGENCYPHYSICIANS Pediatric Emergency Medicine Committee, andEMERGENCY NURSES ASSOCIATION Pediatric Committee

KEY WORDSdeath of a child, emergency department

ABBREVIATIONSAAP—American Academy of PediatricsACEP—American College of Emergency PhysiciansED—emergency departmentEMS—emergency medical servicesENA—Emergency Nurses AssociationCFRT—child fatality review teamCPR—cardiopulmonary resuscitationOPO—organ procurement organizationNRP—Neonatal Resuscitation Program

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors. All authorshave filed conflict of interest statements with the AmericanAcademy of Pediatrics. No conflicts have been declared. Theauthoring groups have neither solicited nor accepted anycommercial involvement in the development of the content ofthis publication.

The guidance in this report does not indicate an exclusivecourse of treatment or serve as a standard of medical care.Variations, taking into account individual circumstances, may beappropriate.

All technical reports from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

www.pediatrics.org/cgi/doi/10.1542/peds.2014-1246

doi:10.1542/peds.2014-1246

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2014 by the American Academy of Pediatrics

Published jointly in Pediatrics, Annals of Emergency Medicine,and Journal of Emergency Nursing.

PEDIATRICS Volume 134, Number 1, July 2014 e313

FROM THE AMERICAN ACADEMY OF PEDIATRICS

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Emergency Medicine in 2003.3 Theseearlier publications called for a patient-and family-centered and team-orientedapproach to the provision of compas-sionate care while respecting social,spiritual, and cultural diversity. Theyoutlined responsibilities of the ED staff

involved in the care of the child, in-cluding the responsibility to facilitateorgan procurement and obtain consentfor postmortem examinations; to facili-tate the identification of medical ex-aminer cases and the reporting ofpotential maltreatment cases; to assistteam members, including emergencymedical services (EMS) personnel, withmanaging critical incident stress; tonotify the primary care provider andother clinicians/specialists; and to de-lineate the responsibility of follow-upof autopsy reports or other medicalinformation. This revised report, aswell as the accompanying revised pol-icy statement of the same title,4 reaf-firms those principles and examinesrecent literature regarding family pres-ence during attempted resuscitation,recommendations regarding terminationof resuscitation efforts, organ donation,benefit of autopsy, practicing procedureson the newly deceased, benefit of con-tinued contact with surviving familymembers, and working to support state,local, and national child fatality reviewteams. New observations regarding theneed for and the most effective ways toprovide communication training, reflec-tions on the effect of patient deathon providers, and definitions of a “gooddeath” are also reviewed. Additionalexisting resources from the emergencycare literature are identified. Observa-tions from venues outside the ED butwith potential application to the EDsetting are considered. Finally, a re-consideration of what can be calledsuccess in pediatric resuscitation isoffered.

BACKGROUND

Data from the National Center forHealth Statistics for the most recentyear completed (2009) revealed thatthere were 73 million children youngerthan 18 years residing in the UnitedStates.5 Although the portion of thepopulation younger than 18 years is

roughly 30% of the total population,fewer than 2% (48 000) of deaths oc-cur in this age range. This statistic isstrikingly different from a centuryago, when 30% of all deaths were inchildren younger than 5 years. Thesedata reflect progress in child healthbut also underscore that child death,unlike parental or spousal death, isno longer an expected part of life.In industrialized nations, child deathstands out as a singular tragedy andan increasingly uncommon event inthe professional lives of clinicians, eventhose whose practice is exclusivelypediatric.

Beginning in 2006, the Health Care Costand Utilization Project has provideda national database of ED visits withthe Nationwide Emergency DepartmentSample.6 Fewer than 3% of all ED pa-tient visits were children younger than1 year; deaths in that age groupaccounted for 1.9% of all ED deaths.Patients 1 to 17 years of age accountedfor 18% of all ED visits and another 2%of ED deaths. In total, the percentageof ED deaths among patients youngerthan 18 years is less than 4%, occur-ring less than 1 per 15 000 ED visits.Because of the relative infrequencyof child death in the ED setting, fewemergency clinicians have extensiveexperience with child death.

Beyond the relative infrequency of thisevent, there are other formidable chal-lenges in managing pediatric deaths,including the following:

� deciding when to terminate resus-citative efforts;

� deciding when not to initiate resus-citative efforts;

� managing painful or distressingsymptoms in pediatric patients;

� ascertaining family wishes or iden-tifying existing advance directives;

� managing family presence in thesetting of attempted pediatric re-suscitation;

TABLE 1 Essential Components of Care inthe ED When a Child Dies

ClinicalResuscitation best practiceTermination of resuscitationIdentifying, validating, and respecting

advanced care directivesOperationalStaff training in communicationTeam response (including readily available

support staff such as security, child life,chaplaincy, social work)

Family presence policyDealing with mediaa

Communication with medical homeDefusing/debriefing for teamPrivate location for family to be with

deceased, means and location to conductrituals

Legal and forensicOrgan donationAutopsyWorking with police and coroner/medical

examinerChild protective servicesChild fatality review teamDocumentation in medical recordPreservation of evidence

EthicalResuscitation: how long is too long?Prolongation of resuscitation efforts for family

presence/organ donationPractice on newly deceasedInitiation of resuscitation at the border of

viability in extreme preterm birthSpiritual and emotionalNeeds of family, including saying goodbye,

memory makingNeeds of multidisciplinary teamEnvisioning a “good death” in the ED

Follow-up care for familyHelping family to know everything was doneAssisting family in explaining to siblings, family,

friendsAssisting family in locating community support

to address grief and bereavementPlan for postautopsy meeting to answer

questionsPlan for scheduled follow-ups and marking of

meaningful datesFollow-up care for teamScheduled voluntary defusing/debriefing with

all members of the emergency care teamwho wish to participate

a Not covered in this report.

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� communicating with and caring forthe family;

� asking families in crisis about po-tential organ donation or autopsy(when, how, who asks);

� effectively discharging forensic re-sponsibilities in a child death, es-pecially when it may be the resultof intentional injury or neglect, whileattempting to respond to the family’sloss with compassion;

� withdrawing or withholding no lon-ger beneficial medical interventionsfor children with chronic life span–limiting conditions;

� balancing respect for the newlydeceased and bereaved with theopportunity for needed practicalexperience for practitioners andtrainees to enhance skills to pre-vent potentially avoidable deaths inthe future;

� resuming work after the emotion-ally difficult episode, needing to“pick up and move on to the nextcase”; and

� addressing the personal and clini-cal team emotions of anger, sad-ness, inadequacy, or blame thatoften result after caring for a childwho dies in the ED.

The health care team’s perceived ob-ligation to maintain a calm and pro-ficient demeanor can be at odds withthe empathetic behaviors that are val-ued as most helpful to families facingthe loss of their child. Because EDproviders are so often exposed tocritical events, they may have evolveda protective mechanism that normal-izes the abnormal events they see ev-ery day, what Truog et al7 have calledthe “routinization of disaster.” And yetwhat parents, caregivers, and familymembers who are enmeshed in thisuniquely catastrophic experience re-port as important and beneficial tothem is the kindness, empathy, andgenuine caring of their child’s care

providers. Given that they can antici-pate that death will be the most com-mon outcome of cardiac arrest in achild,8 ED providers must add care ofbereaved family members to their list ofskills and responsibilities.

Lack of training in critical health carecommunication, particularly in thecompassionate delivery of difficult news,is pervasive even today throughoutthe spectrum of health care education,including nursing education, medicalschool, and residency.9 A large nationalsurvey published in 2003 indicates thatrole models and faculty at the medicalschool level are not equipped to teachthese skills.10 Nurses may also be in-effective in communication.11 In a 2008AAP statement reviewing communica-tion skills,12 it was noted that “healthcare communication is currently learnedprimarily through trial and error.” Thereis increasing evidence that communica-tion skills can and should be taughtand learned,13 and there are a numberof strategies specific to the practice ofemergency care.14 Communication skillsare now recognized as a required corecompetency in nursing, medical student,and resident training accreditationcriteria.12 Emergency clinicians shouldsupport explicit training and skillbuilding in communicating the difficultnews that they may be called to deliverwhen a child dies in the ED.15,16 Resultsof parent surveys confirm that thedelivery of the news of their child’sdeath is extremely important to thelong-term well-being of family mem-bers. Skill and compassion in con-veying bad news may be the mostpowerful therapeutic tool clinicianscan offer affected families.17 An ap-proach to notifying parents of thedeath of their child in the ED is pro-vided in Appendix 1. As with otheruncommon but critical events, simu-lations of management of the death ofa child can be conducted by ED staff toprepare them for this rare event.

FAMILY PRESENCE

Family presence in the ED has beendefined as “the presence of family inthe patient care area, in a locationthat affords visual or physical contactwith the patient during invasive pro-cedures or resuscitation events.”18

Initial resistance to allowing familypresence during attempted resuscitationwas based on fears of litigation andconcerns that the emotional burdenfor family members of watching re-suscitation would create situations thatwould distract ED personnel, potentiallyinterfere with effective resuscitationefforts, and only add to a family’s burdenof grief. These fears have been system-atically studied and for the most partclarified or eliminated.19–21 Mangurtenet al22 reported that 95% of the familiesthey surveyed would again wish to bepresent and felt that it had been helpfulto them, and no disruption of carewas documented. In a similar study ex-amining pediatric trauma resuscitationefforts, there also was no difference intime to milestones of care in traumapatients with or without family memberspresent.23 Studies and position state-ments reflect the increasing ability ofemergency clinicians to effectively sup-port family presence during attemptedresuscitation in the setting of effectivestaff preparation, appropriate policy de-velopment and implementation, and,when staffing allows, providing desig-nated personnel to attend to familymembers.

Family presence has received wide-spread endorsement. Supportive arti-cles have appeared in the ethicsliterature, the resuscitation literature,and the general and pediatric emer-gency medicine and nursing litera-ture.18–27 The Emergency NursesAssociation (ENA), AAP, and ACEP haveposition statements on family pres-ence.24–26 The revised jointly issuedpolicy statement from the AAP, ACEP,and ENA recommends that all EDs




caring for children have a written policyregarding family presence.4

As a further indication of the accep-tance of family presence during re-suscitation attempts, the debate hasturned from a goal of family presenceduring resuscitation to the goal offamily presence at time of death pro-nouncement.27 Strict adherence to thisgoal may result in the prolongation ofotherwise futile resuscitative efforts.An alternative to prolonging an other-wise futile resuscitation attempt whenfamily have not yet arrived may be todesignate a family surrogate, a staffmember whose job is simply to bewith the child. When family membersdo arrive after their child has died,they should be assured that their childwas not alone at the time of death.

NONINITIATION AND TERMINATIONOF RESUSCITATION ATTEMPTS

Deciding when to terminate resuscitationefforts or not to initiate them at allranks among the most difficult tasksfacing the emergency health care teamcaring for a critically ill or injured infantor child.28–30 Although these actions arefrequently described as ethically in-distinguishable, they may feel quitedifferent in the moment of decision.Further complicating these decisionsis a lack of objective data on which tobase guidelines, a desire to allow forfamily presence, the hope to increasepotential for organ donation, and pro-vider distress with the tragedy of thedeath of a child, any of which maycontribute to initiation of or persistencein likely futile resuscitation efforts. Dif-ferences between general and pediatricemergency physicians in time untiltermination of resuscitation efforts on achild were first described by Scribanoet al,31 noting that pediatric-trainedED physicians reported being twice aslikely to terminate efforts if there wasno return of spontaneous circulationafter 25 minutes. The authors speculated

that some of the observed differencesbetween general and pediatric emer-gency physicians were more related toprovider distress than to a lack of fa-miliarity with guidelines.

Although improved clinical outcomeshave been reported since institutingnew Pediatric Advanced Life Support/American Heart Association guide-lines for defibrillation and for chestcompressions, a 2008 review of advan-ces in pediatric resuscitation states thatthere is not sufficient evidence to basea recommendation for duration of re-suscitation efforts in all situations.8

In particular, findings of better-than-anticipated survival from prolongedcardiopulmonary resuscitation (CPR)followed by extracorporeal membraneoxygenation initiated for children whoexperienced cardiac arrest in the PICUcannot easily be extrapolated to theED setting.32 Criteria for terminationof resuscitation are not discussed inthe 2009 review article by Topjian et al,33

and at this time there are no universalcriteria for termination of resuscitationefforts in children. The 2010 PediatricAdvanced Life Support guidelines pointout that clinical variables associatedwith survival include length of CPR,number of doses of epinephrine, age,witnessed versus unwitnessed cardiacarrest, and the first and subsequentrhythm. None of these associations,however, predict outcome. Witnessedcollapse, bystander CPR, and a shortinterval from collapse to arrival ofprofessionals improve the chances ofa successful resuscitation.34

Likewise, in the out-of-hospital setting,there are no nationally accepted guide-lines for noninitiation of resuscitation ortermination of resuscitation that applyto children. The National Association ofEMS Physicians has criteria for adultswho experience traumatic or nontraumaticcardiac arrest, but these guidelines ex-plicitly were not applied to children.Even with adults, however, the decision to

make an on-scene pronouncement versustransport in settings of probable futilitymay be driven more by perceived familyneeds and provider comfort.35 The littleevidence that exists, however, speaksto the family benefit of stopping re-suscitation; at least 2 studies in adultpatients indicate that families may infact adjust better after pronouncementon scene than with transport to a hos-pital.36,37 No such data exist for childrenin the United States, but a Swedishstudy in adolescents with suddencardiac death is supportive of pro-nouncement on scene as an option onthe basis of parental report.38 How-ever, Hall et al39 noted that para-medics are far more uncomfortablewith termination of efforts in the fieldfor a child than for an adult. There-fore, a child or infant may be trans-ported to the hospital even though theresuscitative efforts may be futile, inorder to provide a setting with betterresources for support of the familyand providers.

The situation of unanticipated birthof an extremely preterm infant at thelimit of viability presents yet anotherexample of the dilemmas regardinginitiation and termination of resuscitationefforts, made more complex by evolvingcriteria and conflicting opinions aboutoutcomes for increasingly immature live-born fetuses.40,41 Although factors suchas gender, antenatal steroids, and singleor multiple birth all affect outcome, thefactors most commonly used to assessviability and to predict outcome are birthweight and estimated gestational age;however, these “simple” data points may,in fact, be difficult to determine withany accuracy in the ED setting. Whensuch information is available, many in-stitutional practices reflect the policydescribed in Tyson et al,42 who sug-gested that infants born at 22 weeks’gestation and less not be subjected toresuscitation efforts, that infants bornat 24 weeks’ gestation or more should


all receive attempted resuscitation, andinfants born at a gestational age be-tween these ages should undergoattempted resuscitation only with pa-rental agreement. The recommendationof parental agreement is consistentwith the 2010 AAP/American HeartAssociation Guidelines for Cardiopul-monary Resuscitation and EmergencyCardiovascular Care for neonatal re-suscitation,34 which serves as the basisfor the Neonatal Resuscitation (NRP)Textbook, Sixth Edition,43 and whichcautions interpretation within local pol-icy but advises noninitiation of re-suscitative efforts for infants born ata gestational age of less than 23 weeks,who are born weighing less than 400 g,or who have visible lethal anomalies,such as trisomy 13 or anencephaly. TheNeonatal Resuscitation Program (NRP)guidelines further suggest that effortsbe terminated if, after 10 minutes of ef-fective resuscitative efforts, the infanthas no spontaneous heartbeat.

In the absence of precise determinationof gestational age and weight, theguidelines developed for antenatalcounseling by Batton et al44 may proveuseful in the ED: namely, that if theclinical team believes that there is nochance of survival, resuscitation is notindicated and should not be initiated; ifthe team believes that a good outcomeis very unlikely, then parents should beengaged in the decision-making pro-cess and their preferences should berespected; and if the team’s assess-ment is that a good outcome is rea-sonably likely, resuscitation shouldbe initiated and its benefit should becontinually reassessed, in consultationwith the parents. Alternatively, if neo-natal specialists are readily availableto the ED, resuscitation can be attempteduntil they can participate in the decisionto continue. Comfort care should beprovided for all infants, regardless ofthe goals of care; improved neurologicand physiologic outcomes from comfort

care are clear. Comfort care is of par-ticular importance as well for infantsfor whom resuscitation is not initiatedor is not successful as well as for theirfamilies; care provided at the end of lifeis remembered by the bereaved for therest of their lives. Nursing care of thedying infant includes comfort care forthe family. Nursing guidelines fromother venues, such as the NICU, canprovide tools for ensuring that familieshave the opportunity to create memo-ries that will not only help them withtheir immediate pain but also comfortthem for a lifetime.45 These recom-mendations are in accord with themost recent NRP guidelines.46 In anygiven ED, policy regarding initiation andtermination of resuscitation attemptson the extremely preterm newborninfant should be developed in con-junction with perinatal subspecialistswho are most knowledgeable aboutresources and outcomes in that regionand in accordance with NRP recom-mendations.

REQUESTING ORGAN DONATION

Broaching the subject of organ dona-tion after the death of a child in the EDcan be an intimidating task. However,recent studies have indicated thatfamilies are more often appreciativethan offended or overwhelmed by suchrequests when they are approachedwith sensitivity by skilled staff andwith attention to the optimal timing.47

US federal regulations require thatthe regional organ procurement orga-nization (OPO) be contacted for alldeaths and impending deaths so thattheir representatives can become in-volved in a timely manner.48

The patient who dies in the ED often isnot a candidate for solid organ do-nation but may still be a candidate fordonation of tissue, including corneas,heart valves, skin, bone ligaments,and tendons. There is little publishedliterature regarding tissue donation

requests when a cardiac death occurs.49

Therefore, best practices for request oftissue donation have been extrapolatedfrom the organ consent literature. Like-wise, there is little information aboutbest practices specific to donation oftissue or organs from a deceasedchild.50,51 Availability of suitable donorscontinues to be the major limiting fac-tor for growth in organ transplantation,especially in pediatric recipients, be-cause the size of the organs is a criticalaspect of the match process. Althoughstudies have shown that family mem-bers’ decisions about organ donationare influenced by many factors, in-cluding whether the deceased’s dona-tion intentions are known, parents/caregivers of young children usuallymust make a donation decision withoutany direct knowledge about their child’swishes. Donation can be perceived byfamilies and providers alike as a way tosalvage some meaning from an acute,unanticipated, and tragic loss, althoughthere is literature that calls that per-ception into question.52,53 Timely re-ferral and the use of trained personnelin organ procurement is critical to en-sure that a rushed approach regardingorgan donation is avoided with thefamily. Although the process of organprocurement may start in the ED withthe admission of a critically injuredchild, at present best practice suggeststhat conversations regarding solid or-gan donation not be initiated in the ED ifa patient is going to be admitted to thehospital and that consent for donationis much more common when an OPOrepresentative is able to assist the careteam in presenting this option to thefamily. Consulting OPO staff while thechild is in the ED may provide guidancefor the best timing. When a child dies inthe ED, any exploration of family wishesregarding tissue donation should followat some time removed from the newsof the child’s death but optimally byan OPO staff member who has becomefamiliar to the family during their brief




stay. Ideally, supportive staff, such asa social worker, chaplain, and/or childlife specialist, should be present duringany request.54

AUTOPSY

Autopsy requirements and standardsvary by state. Emergency care pro-viders should be aware of the lawsthat govern postmortem practice intheir state and provide informationto the family accordingly. The medicalexaminer or coroner should be noti-fied, because the majority of ED deathsin most states will be under his or herjurisdiction. Hospitals may establishpolicies and procedures in collabora-tion with the medical examiner’s orcoroner’s office for handling bodiesafter death in the ED. In the eventthat the medical examiner or coronerdeclines autopsy, the ED physicianmay recommend autopsy and consultthe hospital pathologist. Autopsy isgenerally valued for its ability to provideadditional diagnostic and epidemiologicdata; however, Feinstein et al55 arguedfor a family-centered analysis of bene-fits derived from autopsy. They notedthat autopsies also yield informationthat may inform parents’ or siblings’subsequent reproductive or other healthchoices or other information pertinentabout the deceased child, may assistwith quality assurance and improve-ment, and may provide general knowl-edge that benefits both families andthe clinical care teams. Framed in thisfashion, parents may be grateful for therequest. Emergency clinicians who un-derstand these additional potential ben-efits of autopsy for families may be morecomfortable in discussing it with them.

Medical Documentation andNotification of the Child’s MedicalTeam

It is the responsibility of the emergencyhealth care team to ensure promptnotification of the primary care pro-

vider, child’s medical home, and otherappropriate members of the child’smedical team, including out-of-hospitalproviders, in the event of a child’simpending death or death in the ED.Families expect that their primary careprovider will be aware of their child’sdeath, and the task of notifying themedical home and others of a child’steam should not fall to the family. Theirloss may be further compounded if theydo not hear from their child’s providersor there is no outreach or acknowl-edgment from those who have caredfor the child over time. If the child’smedical team is not aware, for instance,routine reminders for well-child vis-its or immunizations might continue.If the child had subspecialty pro-viders, the same guidelines may holdtrue; and in some conditions andcases, the connection between sub-specialist and family may be strongerthan that between family and medicalhome.

In addition, such communication isbeneficial for the ED team, to providehelpful background information andto know that bereaved families willbe followed by caregivers who haveknown them before the child’s death.The medical home may supply the idealstaff to provide a presence at memorialservices, sibling support, and follow-up review of any autopsy findings.Routine follow-up meetings happeninfrequently for families of childrenwho die in the ICU setting,56 and thefrequency of routine follow-up meet-ings with ED staff is unknown. Au-topsy review has benefits not onlyfor the family but also for medicalpersonnel as well, and further in-formation is needed about the impactfor families and health care team mem-bers on providing this practice.

The development of a policy and pro-cedure for handling of the body mayinclude the following:

� a death packet and checklist to en-sure that all appropriate notifica-tions are accomplished;

� documentation of release of valu-ables;

� documentation of release of thebody;

� notification of a funeral home;

� completion of the death certificatein accordance with state law, asapplicable; and

� notification of the child’s primarycare provider.

SUPPORTING THE WORK OF CHILDFATALITY REVIEW TEAMS

Death review is a potent tool for un-derstanding and preventing avoidabledeaths. Although child fatality reviewteams (CFRTs) were first establishedto review suspicious child deaths in-volving abuse or neglect, CFRTs haveexpanded toward a public health modelof prevention of child fatality throughsystematic review of child deaths frombirth through adolescence. Child fatal-ity review is supported at the federallevel by the National Center for ChildDeath Review, funded by the Maternaland Child Health Bureau since 2002; by2005, all but 1 state reported providingstate or local review of child deaths. In2009, 27 states were contributing tothe national database maintained bythe National Center for Child DeathReview.57

Child fatality review operates on theprinciples that a child’s death is asentinel event, the review of whichcan lead to an understanding of riskfactors when based on a multidisci-plinary and comprehensive review.Emergency clinicians can support thismission at several levels: by notifica-tion of their local or state team whena child death occurs; by advocatingfor access to ED records regardingthe case when legislation, regulations,


and policies allow the confidentialexchange of information; and by activeparticipation of ED staff on a par-ticular review or as standing mem-bers of the review team. Because mostED deaths will be medical examiner/coroner cases, notification of the CFRTwill usually be ensured by that mecha-nism.

The National Center for Child DeathReview recommends that local andstate CFRT boards include an ED cli-nician as a standing board member.58

When invited to attend a specific casereview meeting, emergency cliniciansshould make every effort to attend,share information on a specific caseand/or general information on EDpractices and policies, and encourageimprovements in systems and pre-vention. Emergency clinicians are im-portant to CFRTs, because they cansupply information on services pro-vided to a particular child or family ifseen in the ED as well as general in-formation related to emergency care,including types of injuries and deaths,medical terminology, and conceptsand practices specific to emergencycare. They can further support teamactivities by providing the medical in-formation needed for successful pre-vention campaigns and strategies. Simplydocumenting, in detail, the circumstancesof a child’s death allows the emergencyclinician to play a powerful role in theprevention of disease and injury. Emer-gency health care providers shouldsupport training in optimal collaborationwith CFRTs and in the documentation ofcircumstances of death, the completionof death certificates, and analysis offindings on physical examination thatmay shed light on the cause. The use ofCFRT data may result in changes to childwelfare systems, improvement in train-ing and interagency protocols, and newlegislation and regulations. The de-termination of the leading causes ofpreventable deaths has resulted in

implementation of prevention proce-dures (eg, child safety restraints andpool fencing) and prompt public policydiscussion and action.

BALANCING FORENSICRESPONSIBILITIES WITHCOMPASSIONATE CARE

In 2009, an estimated 1770 children inthe United States died as a result ofinflicted injury or neglect. Nearly halfof fatal child maltreatment cases oc-cur in infants younger than 1 year, and80% occur in children younger than4 years. Any child death presentingto the ED may require considerationof maltreatment as a cause of death,especially when the history does notmatch the clinical presentation.59 Al-though there is literature to supportthe need for training and resourcesfor the responsible performance offorensic duties in the ED in situationsinvolving the death of a child,60,61

there is little reported that describesthe tension between health care pro-viders and law enforcement that cansometimes result when the death issuspected to be the result of neglector homicide. The emergency clinicianis called to balance the needs foraccurate forensic information withthe compassionate care of the familywhose child just died. In the focus ontime-sensitive, potentially lifesavinginterventions, medical staff may in-advertently destroy crucial evidence,creating the potential for conflict withlaw enforcement officials. In the acutecare setting, it is often impossibleto determine whether a potentiallylethal condition has resulted from in-tentional or accidental causes, andthe bereaved family should be offeredaccess to their child, in accordancewith local policy, while making everyeffort not to compromise patient andstaff safety or evidence. Access to aforensic nurse examiner, who mayhave developed collaborative working

relationships with law enforcementprofessionals, may be beneficial.62

Forensic nurse examiners have beenspecially trained in evidence collec-tion and the care of victims and sec-ondary survivors and may provideanother option for standardized ex-pert care. They can be notified of apending arrival of a pediatric patientin extremis, remain exempt from theactual resuscitative care, and providean additional trained team memberwhose primary purpose is the preser-vation of evidence. Appendix 2 of thisreport offers a sample protocol forcollaboration between health care pro-viders and law enforcement in sit-uations in which there is concern forintentional injury resulting in death.

PRACTICE ON THE NEWLYDECEASED

Studies from the previous decadehave suggested that 47% to 63% ofemergency medical training programsallowed the practice of procedureson the newly deceased to ensure thedevelopment and maintenance of skillsfor trainees and clinicians to benefitfuture patients; however, in the past,consent was rarely sought.63 With theincreasing frequency of family pres-ence during resuscitative efforts,evolving sophistication of alternativemethods of training such as simula-tion, and a growing sense amongparticipants or observers that normsof decency are being breached, thispractice is likely to be diminishingin frequency. Interestingly, consent forprocedures on the newly deceased issought and obtained more often in theNICU than in the ED, possibly becauseof the existence of a longer standingrelationship and trust. The Societyfor Academic Emergency Medicine hastaken the position that all emergencymedicine training programs shoulddevelop a policy regarding practiceon the newly deceased and make that




policy available to the institution, edu-cators, trainees, and the public.64 TheENA has issued a policy statementaffirming the legitimate need to mas-ter critical and lifesaving procedures,to obtain consent, and to consider al-ternative teaching methods such assimulation.65

FAMILY BEREAVEMENT

The Emergency Department Bereave-ment Resource manual from the Na-tional Association of Social Workersis a practical resource for optimalED preparation for the death of achild in the ED.66 The manual alsooffers practical suggestions for mem-ory making and bereavement care inthe ED after a child has died. Mostfamilies not present at the time ofdeath felt that they should have re-ceived the news from an attendingphysician. Similarly, most felt that afollow-up call from providers who werepresent with them during and afterthe time of their child’s death wouldbe meaningful, although few reportedreceiving such a call.67 Postmortemfollow-up communication has beenshown to be perceived as very positiveby survivors of adult patients who diedin an ED12 and for bereaved parentsof children who died in the PICU.68

Parents recognize staff with whom theyhave had only this brief intense en-counter as the last people to see theirchild alive, with whom they shared anoverwhelmingly difficult event in theirown lives, and therefore as importantkeepers of the memory of their child. Itcan be comforting to ED staff, whothemselves mourn the death of childpatients, to know that even small ges-tures of condolence such as a card orphone call can have a profound andpositive effect on grieving families. Asample bereavement checklist foruse in the ED is included in the Ap-pendix 3 of this report.

Parents reported that they valued thecare provided by physicians and othermembers of the emergency care teamwho were accessible, honest, caring,and able to speak in lay language ata pace that matched the parents’ability to process and comprehend.The pace of this information is nec-essarily accelerated in the emergencysetting, but the family’s need for con-tinued access to providers, whetherfrom the ED staff or from more fa-miliar resources, is very likely thesame. It is the responsibility of EDclinicians to ensure that families willreceive follow-up from the most ap-propriate source for that family, whichmay indeed be the ED staff in somecases.

COLLABORATION WITH PEDIATRICPALLIATIVE CARE SERVICES

Studies in children with known lifespan–limiting conditions report thatbetween 3% and 20% of deaths in thatpopulation will occur in the ED.69,70

Because the ED remains part of thesafety net of care for many childrenwho are dying at home or who facea known life span–limiting condition,it is therefore sometimes the un-anticipated venue for end-of-life carefor such children. Increasingly, chil-dren with life span–limiting con-ditions may be cared for by localagencies and clinicians providing pe-diatric palliative care. Palliative careis a growing subspecialty within pe-diatrics, as evidenced by the recentcreation of a Section on Hospice andPalliative Medicine within the AAP andrecognition of the specialty of pallia-tive care through a certificate ofadded qualification by the AmericanBoard of Pediatrics and other Ameri-can Board of Medical Specialtiesboards. Palliative care services arenot uniformly available, however, evenat tertiary care or exclusively pediat-ric facilities. Nevertheless, as more

children are provided palliative careservices, explicit and anticipatorycollaboration between pediatric palli-ative care services and their corre-sponding EDs will likely improve carefor such children. Many children re-ceiving palliative care have had theopportunity to develop advance careplans. It can be very helpful for EDstaff to have an understanding, inadvance, of the hopes, concerns, andwishes that the child and family mayhave expressed. The emergency in-formation form template developed bythe Emergency Medical Services forChildren program, in conjunction withthe AAP and ACEP,71 includes advancedirectives that can be helpful in criti-cal decision making with the family.Pediatric palliative care specialistscan help families by anticipatingwhich ED and EMS services will serveas entry points for their children andby sharing relevant medical historyand care plan information with theEMS and ED personnel, with permis-sion of the family. Similarly, when EDclinicians identify a child who mightbenefit from such a care plan, theymay consider contacting pediatricpalliative care resources to help de-velop such a plan for future potentialED visits. Pediatric palliative careteams can be a helpful resource forproviding or identifying bereavementfollow-up resources for individualfamilies, for assisting to develop aconsistent policy for bereavementfollow-up from the ED, and for sup-porting ED caregiver gatherings anddebriefings after the death of a child.An innovative project to integratepalliative care principles into emer-gency medicine practice provides ad-ditional resources on the Web site ofthe Center to Advance Palliative Care(www.capc.org). A guideline for de-veloping a protocol for planned deathin the ED of a child with a knownterminal condition is included in Ap-pendix 4.


www.capc.org

THE CONCEPT OF A GOOD DEATH

The idea of a “good death” is a conceptrarely discussed in the emergencymedicine literature, and it is difficultto apply paradigms developed outsideof the ED, mainly in the realm of adultpalliative care, to the acute, unanticipateddeath of a child in the ED. The Institute ofMedicine report on childhood death pro-vides the following definitions for goodand bad deaths:

“A decent or good death is one that is:free from avoidable distress and suf-fering for patients, families, and care-givers; in general accord with patients’and families’ wishes; and reasonablyconsistent with clinical, cultural, andethical standards. A bad death, in turn,is characterized by needless suffering,dishonoring of patient or family wishesor values, and a sense among partic-ipants or observers that norms of de-cency have been offended.”72

Modern medicine has cultivated anunspoken belief that death is a failureon the part of the medical system, andthe culture of the ED is perhaps mostparticularly vulnerable to this covertbelief. A first step toward developingan understanding of what a “gooddeath” might be in the ED setting isnecessarily the acknowledgment thatdeath is not avoidable. The knowledgeand application of best resuscitationpractices, whether in terms of apply-ing interventions or appropriatelywithholding them, are required toknow that a death was unavoidable. Asecond aspect of what might consti-tute a “good death” in the ED is caringfor the survivors of the child’s death ina way that affirms their trust, allowingthem to understand the events leadingup to death, to exert some control inthe situation, and to say goodbye totheir child in whatever way is mean-ingful to them. These tasks have beenidentified as critical to the well-beingof a bereaved family and can besupported by the clinical team withpractical assistance, information, andcompassion.73,74

CARE FOR THE CARE PROVIDER

Finally, how ED staff care for each otherasmembers of an interdisciplinary teamof care providers is a third essentialaspect of a “good death.” All ED staffbenefit from training in communicatingbad news, in managing the families’expected emotional responses, and inunderstanding and managing the emo-tional responses in ourselves and ourcolleagues. It is important to offer vol-untary defusing or debriefing to staffafter critical incidents, such as thedeath of a child, although it is oftenchallenging to find a time to gatherthose who wish to participate. How-ever, Treadway’s75 compelling essay,“the Code,” suggests that even a sim-ple acknowledgment at the bedsideafter the death of a patient may bebeneficial to staff. She speculates thatthere may be a healing potential toclosing rituals that are communalrather than private. An example of abrief closing ritual is provided in Ap-pendix 5 of this technical report.

SUMMARY

The death of a child in the ED remainsone of the greatest challenges for EDstaff. Since the original technical re-port,2 the science of resuscitation hasadvanced and national organizationshave strengthened position papers tofacilitate family-centered care, includingfamily presence during resuscitation.Concepts of the medical home, childfatality review, and pediatric palliativecare have evolved. Hospitals can adoptpolicies and practices that provideguidelines for the care of the patient,family members, and care providers.These policies should incorporate familypresence, termination of resuscitationefforts, bereavement protocols, and evi-dence preservation. It is important toaddress compliance with laws gov-erning jurisdiction after death and themeans to support staff when a childdies in the ED.

LEAD AUTHORSPatricia J. O’Malley, MD, FAAPIsabel A. Barata, MD, FACEP, FAAPSally K. Snow, RN, BSN, CPEN, FAEN

AMERICAN ACADEMY OF PEDIATRICS,COMMITTEE ON PEDIATRICEMERGENCY MEDICINE, 2013–2014Joan E. Shook, MD, MBA, FAAP, ChairpersonAlice D. Ackerman, MD, MBA, FAAPThomas H. Chun, MD, MPH, FAAPGregory P. Conners, MD, MPH, MBA, FAAPNanette C. Dudley, MD, FAAPSusan M. Fuchs, MD, FAAPMarc H. Gorelick, MD, MSCE, FAAPNatalie E. Lane, MD, FAAPBrian R. Moore, MD, FAAPJoseph L. Wright, MD, MPH, FAAP

LIAISONSLee Benjamin, MD – American College ofEmergency PhysiciansKim Bullock, MD – American Academy of FamilyPhysiciansElizabeth L. Robbins, MD, FAAP – AAP Section onHospital MedicineToni K. Gross, MD, MPH, FAAP – National Asso-ciation of EMS PhysiciansElizabeth Edgerton, MD, MPH, FAAP – Maternaland Child Health BureauTamar Magarik Haro – AAP Department ofFederal AffairsAngela Mickalide, PhD, MCHES – EmergencyMedical Services for Children National Re-source CenterCynthia Wright, MSN, RNC – National Associa-tion of State EMS OfficialsLou E. Romig, MD, FAAP – National Association ofEmergency Medical TechniciansSally K. Snow, RN, BSN, CPEN, FAEN – EmergencyNurses AssociationDavid W. Tuggle, MD, FAAP – American College ofSurgeons

STAFFSue Tellez

AMERICAN COLLEGE OF EMERGENCYPHYSICIANS, PEDIATRIC EMERGENCYMEDICINE COMMITTEE, 2013–2014Lee S. Benjamin, MD, FACEP, ChairpersonIsabel A. Barata, MD, FACEP, FAAPKiyetta Alade, MDJoseph Arms, MDJahn T. Avarello, MD, FACEPSteven Baldwin, MDKathleen Brown, MD, FACEPRichard M. Cantor, MD, FACEPAriel Cohen, MDAnn Marie Dietrich, MD, FACEPPaul J. Eakin, MDMarianne Gausche-Hill, MD, FACEP, FAAP




Michael Gerardi, MD, FACEP, FAAPCharles J. Graham, MD, FACEPDoug K. Holtzman, MD, FACEPJeffrey Hom, MD, FACEPPaul Ishimine, MD, FACEPHasmig Jinivizian, MDMadeline Joseph, MD, FACEPSanjay Mehta, MD, Med, FACEPAderonke Ojo, MD, MBBSAudrey Z. Paul, MD, PhDDenis R. Pauze, MD, FACEPNadia M. Pearson, DOBrett Rosen, MDW. Scott Russell, MD, FACEPMohsen Saidinejad, MDHarold A. Sloas, DOGerald R. Schwartz, MD, FACEPOrel Swenson, MDJonathan H. Valente, MD, FACEPMuhammad Waseem, MD, MS

Paula J. Whiteman, MD, FACEPDale Woolridge, MD, PhD, FACEP

FORMER COMMITTEE MEMBERSCarrie DeMoor, MDJames M. Dy, MDSean Fox, MDRobert J. Hoffman, MD, FACEPMark Hostetler, MD, FACEPDavid Markenson, MD, MBA, FACEPAnnalise Sorrentino, MD, FACEPMichael Witt, MD, MPH, FACEP

STAFFDan SullivanStephanie Wauson

EMERGENCY NURSES ASSOCIATION,PEDIATRIC COMMITTEE, 2011–2013Sally K. Snow, BSN, RN, CPEN, FAEN – 2011 Chair& 2013 Board Liaison

Michael Vicioso, MSN, RN, CPEN, CCRN – 2012 ChairShari A. Herrin, MSN, MBA, RN, CEN – 2013 ChairJason T. Nagle, ADN, RN, CEN, CPEN, NREMT-PSue M. Cadwell, MSN, BSN, RN, NE-BCRobin L. Goodman, MSN, RN, CPENMindi L. Johnson, MSN, RN,Warren D. Frankenberger, MSN, RN, CCNSAnne M. Renaker, DNP, RN, CNS, CPENFlora S. Tomoyasu, MSN, BSN, RN, CNS, PHRN

BOARD LIAISON 2011 & 2012Deena Brecher, MSN, RN, APRN, CEN, CPEN, ACNS-BC

STAFF LIAISONSKathy Szumanski, MSN, RN, NE-BCDale Wallerich, MBA, BSN, RN, CENMarlene Bokholdt, MS, RN, CPENPaula Karnick, PhD, CPNP, ANP-BCLeslie GatesChristine Siwik


APPENDIX 1: GUIDELINES WHENNOTIFYING A FAMILY OF THE DEATHOF THEIR CHILD IN THE ED

Modern medicine has cultivated anunspoken belief that death is a failureon the part of the medical system, andthe culture of the ED is perhaps mostparticularly vulnerable to this covertbelief. It is helpful to acknowledge thatdeath is not avoidable in many of theconditions we are called on to treat inthe ED. When it feels as if all you haveleft is the terrible news of a child’sdeath, in fact your presence, empathy,practical assistance, and informationenable you to provide a bereavedfamily with essential assistance thatthey will need to adjust to their loss.Families who lose a child through anacute and unanticipated event haveat least these tasks to address: theyneed to understand the events leadingup to death, to feel that they can exertsome control over a universe sud-denly completely out of control, to beable to say goodbye to their child insome meaningful way, to be able tomake sense of the death, and to beable somehow to carry the child for-ward in their lives as they negotiatea new and ongoing relationship withthe child they have lost. Your role intelling the family about the death oftheir child can help them towardaccomplishing these tasks.

Preparation

First, take a moment for self-reflection,to acknowledge your own feelings (in-adequacy, guilt, sadness, anger, fear)and perhaps to find a colleague withwhom to share those emotions before-hand. Take note of those emotions,whatever they are, and then, withoutcomment or criticism, allow yourself toput them aside.

Think for a moment how you mightact if a dear friend told you that he orshe had just received terrible news:what would you do, as one human

being to another? Use that as a modelof how best to help this family withthe news you have to give them. Striveto be a kind and steadying presence.

Families take it as a mark of respectand an indication of how importantlywe view their loved one when the re-sponsible attending physician is theone notifying the family.

Know and use the child’s name.

Ensure that the right family membershave been gathered and available re-sources have been assembled (whichmight include chaplaincy, social work,child life, or outside family supports, suchas family chaplain or primary care pro-vider).

Use a skilled medical interpreter, nota family member, for any translationneeds. If using a family member is theonly recourse, acknowledge to thefamily interpreter how difficult it is tohear bad news and then have toshare that news.

Choose an appropriate setting thatis quiet, provides privacy, and hasenough places to sit for all who areneeded to be present, with water andtissues available. Make yourself avail-able and presentable (turn off beeper,check appearance, be sure to sit down).

Have a written copy of your name andcontact information available. You maywant to include other staff membernames as well, such as the primarynurse, the social worker, child life, etc.

Steps in the Process

Introduce yourself and your role, shakehands or touch family members if ap-propriate, sit down at eye level.

If appropriate, determine what thepatient and family understand aboutthe present situation. “Please tell mewhat you already know about whathas happened to [child’s name].”

Prepare them with fair warning: “I amso sorry that I have to give you thisbad news.” Hold them in your gaze.

Continue to hold them in your gaze andinform them of the death in a directmanner, using the words “die” or“death.” For example, “We did every-thing we possibly could, but [child’sname] has died.”

Sit quietly and allow the family to re-spond. The entire range of humanemotion is possible at this moment.Resist the temptation to fill this silenceand allow the family to be the first tobreak the silence.

Hear and respond to the family andpatient’s emotions, and provide addi-tional information at the family’s orpatient’s pace. (Avoid statements thatbegin with “I know you must be feel-ing very....”) Instead, acknowledgewhat you see or feel. “I cannot imag-ine how difficult it must be to hearthis news.”

Solicit questions, assess understanding,and follow the family’s lead. “I havegiven you such terrible news. Would ithelp to see [child’s name] now, or doyou have any questions for me, anythingthat I can explain better?”

Families may not ask but may becomforted to know that their child didnot suffer, so if it is possible to givethat reassurance, do so.

Any bad outcome with a child is in-extricably linked to parental feelingsof guilt. If it is possible to give re-assurance about the family role in theevent or note any contribution theymade that was helpful, do so. “I don’tsee any way this accident could havebeen anticipated.” Or, “Your informationabout her medical problems in the pastwas essential information for us.”

Be prepared to repeat information,because it is nearly impossible to takein new information when under thekind of stress that a family memberwould be feeling at this time. Never-theless, understanding and sometimeseven reconstructing the events that ledup to their child’s death are often an




essential part of family acceptanceand well-being after the loss of achild. Even simple information aboutwhat will happen next or what choicesthey have will be helpful. Your abilityto give the information they need andask for, at the pace they require, canbe one of the most therapeutic “pro-cedures” you can perform.

Offer assistance in helping the familyto share this news with others, such assiblings or young children. Let themknow that you will be notifying thechild’s primary care provider and anyrelevant specialists.

Give your contact information in writtenform and let the family know of anyfollow-up arrangements, such as a callfrom the ED social worker in the nextday or so.

Consider writing a condolence noteto any family to whom you havehad to give the news of their child’sdeath in the ED. It is an act withremarkable potential for healing.

SELECTED RESOURCES

Jurkovich GJ, Pierce B, Pananen L, Rivara FP.Giving bad news: the family perspective. JTrauma. 2000;48(5):865–870; discussion 870–873

Hobgood C, Harward D, Newton K, Davis W. Theeducational intervention “GRIEV_ING” improvesthe death notification skills of residents. AcadEmerg Med. 2005;12(4):296–301

Janzen L, Cadell S, Westhues A. From deathnotification to funeral; bereaved parents’experiences and their advice to professionals.Social Work Faculty Publications [serial online].2004. Paper 6. Available at: http://scholars.wlu.ca/scwk_faculty/6. Accessed March 18, 2013

APPENDIX 2: SAMPLE PROTOCOLFOR COLLABORATIVE PRACTICEWITH HOMICIDE INVESTIGATIONON SITE IN ED

City Police Department HomicideDivision

The following procedures are to beused by city police officers when re-sponding to a death involving a child

age ≤6 years at an area hospital. Theprocedures are designed to maintainthe integrity of the police death in-vestigation while permitting the hos-pital staff the continued use andmanagement of the ED. The proceduresalso recognize the rights of the familyto have access to their child to grievethe loss. Compassion and cooperationare key in handling these situations,and officers should always exercisegood judgment in their decisions as itrelates to child death investigations. Ifthere are any questions concerningthese procedures, please contact yourcity’s Homicide Division for resolutionand guidance. A sample algorithm isprovided in Appendix 2A.

Child Death InvestigationProcedures

� When notified of a child death at alocal hospital, responding officers,whether on-duty or working secu-rity, will ensure that the HomicideDivision is notified immediately ofthe death. As many details as pos-sible of the death should beobtained and relayed to the Homi-cide Division, such as name of thechild, location the child was trans-ported from, who transported thechild, and any medical history orcondition known.

� If the child was transported to thehospital from an outside location,make sure an on-duty unit is dis-patched to the location to securethe scene as part of the investiga-tion. In most instances, on-dutyunits will already be involved. Ifnot, the Homicide Division desk of-ficer can assist in getting a unitsent to the transporting location.

� Allow hospital staff to move thechild out of the ED treatment roomto another room or morgue. Theofficer will stay with the child and“observe and record all observa-tions” until the arrival of the homicide

investigators. Remember, the ED roomIS NOT a crime scene; the evidence forthe investigation is the body of thedeceased.

� Immediate family members shouldbe allowed access to grieve theloss of their child. The officersshould remain with the child andthe family members until the ar-rival of the homicide investigators.Hospital staff should swaddle thechild’s body in a clean sheet whilepreserving the sheet used duringresuscitation efforts and withoutremoving equipment used duringthe resuscitation efforts.

� If there are “obvious” signs oftrauma, such as broken bones, sig-nificant bruising, or other injuryindicating foul play in the child’sdeath, the child’s body may be re-moved from the ED treatment roominto a secure room or morguepending the arrival of homicideinvestigators. In this instance, thereshould be no contact with familymembers and the child’s body shouldbe secured as evidence. Any ques-tions about this should be directedto the Homicide Division.

In cases of child deaths in which thechild has a history of medical prob-lems and treatment of a long-term ill-ness that make it clear that the deathdoes not involve foul play or negligence,homicide investigators may elect notto respond or conduct the investigation.In those instances, the officer is re-sponsible for preparing the reportand conducting the scene inves-tigation. This decision is made by theHomicide Division duty lieutenant,and all decisions about the homicideresponse should be directed to himor her.

Any questions about the handlingof child death investigative proce-dures at area hospitals should bedirected to the City Police HomicideDivision.


http://scholars.wlu.ca/scwk_faculty/6

http://scholars.wlu.ca/scwk_faculty/6

APPENDIX 2AThe deceased patient in the emergency center (EC) decision tree: balancing the rights of survivors with the necessary preservation of evidence (courtesyPaul Sirbaugh, MD, personal communication). EKG, electrocardiogram.




APPENDIX 3: SAMPLE RESOURCEGUIDE FOR ED BEREAVEMENTCHECKLIST AND MEMORY BOX

This resource is meant to help guideyou in the next stage of your care fora bereaved family.

Your interventions and caring have thepotential to bring much comfort andmeaning to this family and significantlyinfluence their grieving.

Sections I and II: Demographics/Information

Please complete the Bereavement Check-list, which will help with bereavementfollow-up and staff support. Please placethe finished checklist in the designatedlocation/or to the designated personnel.

Section III: Family Members

Our ED offers the option of family pre-sence during invasive procedures andresuscitation. A family facilitator, nurse,social worker, or physician should as-sess the family before being with thepatient. The family facilitator shouldaccompany the family to provide sup-port and medical explanations.

For many families, this may be theirfirst experience of death, and theywill not know what is permissible orexpected. They may not know what willbe comforting or healing to them nowor in the future and will look to us forguidance. You might say somethinglike “Many families have told us thatthey were comforted by the memoryof talking to the patient or holding ortouching their loved one—would youlike to be able to do that?” Wheneverpossible, it is desirable to offer familyprivate time (accompanied or un-accompanied as they request) to bewith their loved one after death.

Family members may arrive after thechild’s body has been transportedto the morgue and the morgue staffare not available. If appropriate, the re-source nurse should notify the nursing

supervisor and police and security tobring the family to the morgue andidentify supportive staff (social work,nursing, physician) to accompany familymembers.

Section IV: Memory Box

The memory box is a legacy gift thatcan be given to family members afterthe death of their child. It can includehand and foot molds made out of modelmagic clay, handprints and footprintsusing inkless wipes and paper, a lockof hair, photographs if the family sochooses, and any mementos the childcame with (clothes, shoes, jewelry,hospital band, hair accessories, etc).The directions for making the clayimprints and inkless prints are in eachbereavement box, along with the nec-essary tools to make them. All ofthe memory box supplies (includingresources and blankets) are kept______. Sometimes families (in-cluding siblings) like to be involvedin making the ink prints and clayimprints, so this opportunity should beoffered to the family. More than 1 boxcan be made for families if the parents/caregivers live separately. Extra copiesof the ink prints can be made using thecopier for additional family members. Ifthe family does not want to take the boxhome with them at this time, please letthem know it will be kept at the hospitalin case they change their mind over thenext several months. Please lock the boxin the valuables cabinet if the family doesnot want to take it home at this time.

Section V

Notification

Most ED deaths are considered amandatory autopsy by the medicalexaminer. If the medical examinerdecides to accept the case while thefamily is still in the ED, the familyshould be told, because it can affectfuneral arrangements. Please note thatthe OPO will automatically be notified by

the hospital when the death certificateis completed. Studies have shown thatprofessional OPO staff members aremore skilled (even more than seasonedED staff) at discussing potential organdonation with families, so you shoulddefer all discussion of organ donationto OPO staff. In pediatric deaths ofuncertain etiology, such as suspectedsudden unexpected infant death orabuse, it is sometimes helpful to ar-range with the medical examiner thatthe autopsy be performed at a facilitywith specific pediatric expertise.

Aftercare of the Deceased

To the extent possible, we should re-spect and support faith-based or cul-tural traditions around treatment ofthe deceased after death. For instance,for some traditions, it is not acceptableto leave a deceased person unattended,whereas for others it may not be ac-ceptable for the child’s body to behandled by someone of the oppositesex. You might ask “Does your familyculture or faith tradition give you guid-ance about what should happen aftersomeone dies? We would like to supportyou in that if we can.” For many families,particularly those dealing with the lossof a child, the thought of leaving thedeceased child alone in the morgue isvery difficult. If a medical examiner au-topsy is declined, it is sometimes possi-ble to arrange for the funeral home topick up the child’s body from the ED. Thisprocedure involves the family identifyingfuneral home, attending physician com-pleting a death certificate, and admittingstaff processing the paperwork.

APPENDIX 4: GUIDELINES FORDEVELOPING A PROTOCOL WHENTHE ED BECOMES THEUNANTICIPATED VENUE FOREND-OF-LIFE CARE FOR A CHILDWITH A TERMINAL CONDITION

Although the ED is not a common venuefor end-of-life care of children with


APPENDIX 3ABereavement Checklist. MR, medical record.




known terminal conditions, as many as10% of children with complex medicalconditions will die in the ED setting.Some of those children will have ad-vance care plans and family may havehoped that their child could die athome. However, in many locales, thereare not resources to provide hospiceor end-of-life care in the home setting forchildren, and many parents/caregiversreport that even when the child’s deathis anticipated, the presence of medicalpersonnel at the time of active dying iscritical to their support and comfort.

In developing individual institutionalguidelines for the care of a child witha terminal condition who presents to theED actively dying, consider input fromthe following stakeholders if available:

ED physician, nursing and adminis-trative staffHospital palliative careChaplaincySocial servicesChild life servicesPharmacy (for rapid access to phar-macologic management of symptoms)Admitting staffCase managementHospitalist service (for considerationof rapid/direct admission or trans-fer to an alternate siteCommunity-based palliative care pro-viders

Consideration should be given to clar-ification of the means to facilitate thefollowing:

� Assessment of the family’s wishes,including resources needed for thechild to return home to die

� Expeditious symptom manage-ment (respiratory distress, delirium,seizures, pain, control of secretions,control of bleeding)

� Provision of a private space in theED, with the option for family tohold child if feasible and desired

� Contacting all existing care pro-viders on the child’s team

� Identification of alternate venuesof care, including inpatient service,residential hospice, home

� Memory making by family members

� Ensuring bereavement follow-up,whether by ED staff or other

� Ensuring debriefing mechanism forED and EMS staff.

In the event that a child with an ad-vance care plan presents to the ED inmedical crisis:

� Provide all comfort measures.

� Acknowledge all family memberspresent

� Ask about current goals of care (eg,maximizing comfort versus attemptingto prolong life)

� Engage in rapid resolution of se-vere distress and manage ongoingsymptoms such as pain, secretions,seizures, delirium, respiratory dis-tress, bleeding

� Provide private location as possi-ble, with option for family to holdchild if feasible and desired

� Ask family regarding their wishesat this time.

� For example: “We will keep [yourchild] safe and comfortable. If this

is her time to die, what can we doto support you and your familybest? Is there anyone (physician,faith community, family, etc) youwould like us to contact?”

� Contact primary and specialty careproviders

� Notify OPO if indicated

� Assess optimal venue for care ifdeath is not imminent: for exam-ple, “If your hope would be thatyour child could be at home whenhe/she dies, what resources willyou need for your child to be safeand comfortable there? If we can-not secure those in your home set-ting, we will try to find the best placefor you to be as a family. Would youlike us to arrange for your child to beadmitted to the pediatric floor/residential hospice?”

� Provide opportunity for memorymaking, any rituals to support faith-tradition or cultural practice, andfamily leave-taking

� Identify ED and EMS staff involvedin care for participation in staffdebriefing and in any bereavementfollow-up for family.

APPENDIX 5: EXAMPLE OFA CLOSING RITUAL AFTER THEDEATH OF A CHILD IN THE ED

“I thank everyone here for their ef-forts to save [this child’s name] life.Please take a moment in silence withme now to acknowledge our sorrow athis or her passing… In his or her name[touching the child if appropriate] maywe each be rededicated to our work.”

REFERENCES

1. Knapp J, Mulligan-Smith D; American Academyof Pediatrics Committee on Pediatric EmergencyMedicine. Death of a child in the emergency

department. Pediatrics. 2005;115(5):1432–1437

2. American Academy of Pediatrics, Committeeon Pediatric Emergency Medicine;; American

College of Emergency Medicine, PediatricEmergency Medicine Committee. Death of achild in the emergency department: joint

statement from the American Academy of Pe-diatrics and American College of EmergencyMedicine. Pediatrics. 2002;110(4):839–840

3. Knazik SR, Gausche-Hill M, Dietrich AM, et al.The death of a child in the emergency de-partment. Ann Emerg Med. 2003;42(4):519–529

4. American Academy of Pediatrics, Committeeon Pediatric Emergency Medicine; AmericanCollege of Emergency Physicians, Pediatric


Committee; Emergency Nurses Association,Pediatric Committee. Policy statement: deathof a child in the emergency department. Pe-diatrics. In press

5. Kochanek KD, Kirmeyer SE, Martin JA,Strobino DM, Guyer B. Annual summary ofvital statistics: 2009. Pediatrics. 2012;129(2):338–348

6. Healthcare Cost and Utilization Project.Nationwide Emergency Department Sam-ple. Available at: www.hcup-us.ahrq.gov/nedsoverview.jsp. Accessed April 11, 2010

7. Truog RD, Christ G, Browning DM, Meyer EC.Sudden traumatic death in children: “wedid everything, but your child didn’t sur-vive”. JAMA. 2006;295(22):2646–2654

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DOI: 10.1542/peds.2014-1246 originally published online June 23, 2014; 2014;134;e313Pediatrics

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