MEDICOLEGAL DEATH INVESTIGATION DISCLOSURES

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9/4/2020MEDICOLEGAL DEATH INVESTIGATIONDISCLOSURESUNEXPLAINED PEDIATRIC DEATHS:Investigation, Certification & Family NeedsProcedural guidance and key considerationsdeveloped by theNational Association of Medical Examiner’s Panelon Sudden Unexpected Death In Pediatrics No financial disclosures for speaker (B. McCleskey) NAME panel work funded by SUDC Foundation. Reference to book published by AFP.Presented by Brandi McCleskey, MDForensic PathologistUAB Department of PathologyAssociate Coroner/Medical ExaminerJefferson County Coroner/Medical Examiner’s OfficeNATIONAL ASSOCIATION OF MEDICAL EXAMINER’SPANEL ON SUDDEN UNEXPECTED DEATH IN PEDIATRICSVivienne, 3 years oldKeegan, 8 months oldAdeline, 14 months oldTayjon, 2 ½ years old,Bryson, 10 weeks oldTracey Corey,Co-Chair and EditorOrrin DevinskyElizabeth A. Bundock,Co-Chair and EditorEric EasonMichael J. AckermanWendy GuntherThomas A. AndrewAmanda J. KayIsabel BarakLaura KnightKristen LandiRachel Y. MoonVincent J. PalusciKathryn PinneriCynthia SchmidtMary Ann SensSusan BerryErin BowenKelly LearCarrie ShapiroMendozaAdele LewisJane W. TurnerKristin BurnsEvan MatshesMargaret WarnerRudolph CastellaniBrandi McCleskeySteven WhiteDerek BruceTHE MOTIVATIONStacy A. DrakeLaura Gould CrandallNori WilliamsWith parent permissionTHE RESULT Over three years of work – started inlate 2016 Massive reference collection,organization and review Numerous committee conferencecalls as well as separatesubcommittee activities Two in-person 2 day meetings;meeting at NAME Annual Meeting;editors retreat Support by SUDC Foundation: Publication of book by AFP Made available to NAME membersand others Publicly available for purchase onAmazon.Procedural Guidance/KeyConsiderations for:Scene investigationAutopsy and ancillary testingCertification and SurveillanceSynoptic ReportingFamily and professionalinteractionsOBJECTIVESOBJECTIVESAt the conclusiontheofAtthisconclusionpresentation, ofparticipantsthisshouldbe able topresentation,participantsshould be ableto: Understand what constitutesan unexplained pediatricdeath Apply investigative andcertification guidelines totheir medicolegal deathinvestigation practice Recognize value instandardized certificationpractices and the impact ofsuch on vital statistics andpublic health1

9/4/2020HISTORICAL OVERVIEWTOPICS COVERED: Ancient, Medieval, and Renaissance Infant and child mortality was significant and multifactorial Focused primarily on overlay 19th CenturyHistoricalPerspectivesMedicolegal DeathInvestigationAutopsy andAncillary TestingSynopticReportingDeath Certificationand SurveillanceFamily Needs &ProfessionalRelations Some children began being autopsied 1830 (J.H. Kopp) described “thymic asthma” ascribing blame toan enlarged thymus for death Despite being debunked 28 years later using autopsy data(Friedleben), was used in court in 1884 Continued battle between natural and unnatural means byauthorities Over 140 years of the “great divide” Overlay and later child abuse 1892 (Dr. Templeman) described 258 cases withaccidental overlay and factors common among them Earliest description of associated risk factorsHISTORICAL OVERVIEWHISTORICAL OVERVIEW 20th Century 1963: Conference in Seattle (10 panelmembers/30 guests) Dr. Bruce Beckwith adamantly opposedto “blaming the parents” Named (along with Valdes-Dapena) Sudden Infant DeathSyndrome 1944: Dr. Harold Abramson identified another risk factor Prone sleeping position Advised parents on safe sleep Natural means focused on respiratory illness andbacterial infections 1956: Adelson and Kinney published results of 126 childdeaths with most being due to respiratory infection Disproved the concept of diagnostic findings of suffocation Child abuse, “battered child syndrome,” and “shakenbaby” took years to take hold as a possibility for death(1960s and 1970s)HISTORICAL OVERVIEW Mechanistic shifts: Infectious, hypoxemia,apnea History and scene investigations required 1985: SIDS finally defined as “heterogeneousgroup of pathogenetic phenomena rather thansingle entity” (Valdes-Dapena) Shift to scene investigation, medicolegal deathinvestigators, forensic pathology involvement 1989: US National Institute of Child Health andHuman Development Defined criteria for diagnosis of SIDS (including “onlyduring sleep”) Early 90s: “Back to Sleep” campaign Pediatric pathologists, pediatricians, forensicpathologists (minority) Lacked consensus internationally Concluded use of “sudden death syndrome” 1969: Follow-up Seattle conference whereBeckwith proposed and the panel adopted“Sudden Infant Death Syndrome” Unexpected by history and in which a thoroughpostmortem examination fails to demonstrate acause of death Two peaks in “nontraumatic” childhood deaths 1 – 4 years: undetermined or infectious 14 – 21 years: heart and/or brain related findingsHISTORICAL OVERVIEW Triple Risk Model (1994) 1996: Guidelines for investigation andreporting (CDC) 2004: Expert panel refined SIDS intocategories Shift to “Sudden Unexplained Infant Death”among some experts 2005: Krous published “sudden unexplaineddeath in childhood” paper 2007: NAME provided SUID position paper 2020: .2

9/4/2020HISTORICAL OVERVIEWHISTORICAL OVERVIEW Shift away from SIDSon death certificatecrippled ability tolook at vital statistics No consensus amongcertifiers More recently thesecases are lost as“undetermined”RISK FACTORSRISK FACTORSCase-control studies demonstrate ASSOCIATION betweenexposure and risk (or protective) factor NOT CAUSATIONEstablished before shift away from SIDS Non-Hispanic black andAmerican Indian/AlaskaNative Low maternalsocioeconomic andeducational status Young maternal age Prone positioning (onstomach) Bed-sharing Parental smoking Prematurity and low birthweightHISTORICAL OVERVIEWHISTORICAL OVERVIEW Prone positioning increases risk of Room sharing Hypercapnia and hypoxia Overheating Changes in autonomic control ofcardiovascular system Increased arousal thresholds Tobacco exposure (dose-dependent) Estimated that 1/3 could be prevented ifall exposure eliminated Tight-fitting mattress ina crib Feeding of breast milk Pacifier use Bed sharing and soft bedding Particularly dangerous when adult bedsharers have consumed alcohol orarousal-altering medications/drugs Never on couches or cushioned surfaces Use caution in sitting devices for thoseless than 4 months of age3

9/4/2020HISTORICAL OVERVIEWHISTORICAL OVERVIEW Sudden Unexpected Deaths inAthletes Ability to study is limited based on currentcertification practices Ability to study genetic predisposition hasexpanded Rarely reported in the prepubertal agegroup Typically of a cardiac etiology (hereditaryor acquired) Children with history of epilepsyand/or febrile seizure Most events occur during sleep Apnea may be only symptom in infancy Siblings Modifiable sleep-environment risk factors Potential genetic associationsMEDICOLEGAL DEATH INVESTIGATION Neuropathological Cardiovascular Metabolic Sophisticated testing platforms forinfectious agentsMEDICOLEGAL DEATH INVESTIGATION Children are not small adults All age groups have different concerns, developmentalabilities and milestones Any child death falling under the jurisdiction of a medicalexaminer/coroner should be investigated by a certifiedmedicolegal death investigator, independent from lawenforcement Information obtained relies on parents, caregivers, andother relatives Often distraught at the scene/hospital May or may not have played a role in the death Delicate balance: obtaining information needed forinvestigation while being sensitive to the family’s griefMEDICOLEGAL DEATH INVESTIGATIONMEDICOLEGAL DEATH INVESTIGATION Scene investigation is critical Should be performed within 24 hours even whenthe child has been transported to the hospital, toinclude evaluation of any potential hazards orexposures The child’s environment plays a much larger rolein death investigation than most adults Must visit and photograph the environment where thechild was initially found Many infants/children are transported to thehospital with attempts at resuscitation In cases of death during apparent sleep, the sleepingenvironment should be documented to includesoftness, such as the presence of a pillow top mattressand excessive bedding materials Best to use a doll brought with you; avoid usingsomething in the residence if possible Use placards denoting “found” and “placed” Doll reenactment is recommended to document theposition of the child when placed to sleep and whenfound4

9/4/2020DOLL REENACTMENTMEDICOLEGAL DEATH INVESTIGATIONMEDICOLEGAL DEATH INVESTIGATION Photographic documentation of thescene is required Overall views of the environment Availability of food and necessary care items Use of a ruler/scale is recommended for injuriesand sleeping environment for all cases in whichthe child apparently dies during sleep The condition of the residence should bedocumented The clothing of any adults or siblings should beviewed and photographed for infants/childrenfound dead while sharing sleep surfacesMEDICOLEGAL DEATH INVESTIGATIONDOCUMENTATION OF THE BODY The type and amount of clothing andblankets on and around the child Focused views of the sleepingenvironment and the presence of anybody fluids near the child Lividity pattern and rigor mortis Visible injuries Evidence of medical interventionMEDICOLEGAL DEATH INVESTIGATION If the child wasn’t transported initially, removalof the child from the residence should beperformed with care and compassion Recommended that the child be wrapped in a sheetor blanket and carried to the transport vehicle, to beplaced inside a body bag and/or transport box Some states/jurisdictions have laws allow forviewing of a deceased child Usually requires supervision Be as accommodating as possible withoutjeopardizing the investigationMEDICOLEGAL DEATH INVESTIGATION Use of an infant/child death reporting form isrecommended Ensures required information is gathered uniformly As a standard practice, may help the family feel lessinterrogated Provides background information for obtainingnecessary recordsMEDICOLEGAL DEATH INVESTIGATION Sudden unexplained infant and child death reporting forms Checklist with all information needed for pediatric deathinvestigation Infant form recently revised by CDC Childhood form developed by Panel Both available in the appendices of the reference textSudden Unexpected Infant DeathSudden Unexpected Child DeathInvestigation Reporting FormInvestigation Reporting Form BEST PRACTICE: ask all the questions, all thetime, as soon as possible2019 RevisionNew5

9/4/2020AUTOPSY AND ANCILLARY TESTINGAUTOPSY AND ANCILLARY TESTING An autopsy must be performed in all sudden unexpected deathsin infants and children The autopsy should be performed promptly and as soon aspractical following death, to preserve the quality of diagnosticspecimens A radiologic skeletal survey should be performed in all infantsand young children. Histology and comprehensive toxicology must be performed inall sudden unexpected deaths in infants and children. When unexplained after gross examination: Microbiological cultures (and other related studies),directed by the case history and autopsy findings. Molecular testing may be performed in conjunction withcultures Chemical analysis of vitreous fluid for electrolytes andglucose should be performed. Specific autopsy practices outlined in reference text Preserve specimen to allow for later genetic testing (lavender topEDTA tube of blood at minimum) Considered critical in cases of SUDC to evaluatecardiomyopathies/channelopathiesAUTOPSY AND ANCILLARY TESTINGPROCEDURAL GUIDANCE Communication should be considered a step in the autopsy. Preliminary results to family, law enforcement, otherstakeholders within 48 hours Final results and the cause of death to the family verbally (by scheduled appointment, either via telephoneor in‐person) and in writing (i.e., report if desired) The autopsy report should include a detailed opinion sectionthat explains the rationale for the cause and manner of deathdetermination written in a manner accessible to the lay reader, questions about unusual results or circumstances shouldbe anticipated and explained proactively may include recommendation for clinical evaluation andgenetic testing for surviving family membersSYNOPTIC REPORTINGSYNOPTIC REPORTINGWHY A SYNOPTIC REPORT?Challenges with Death CertificateDesired Solution Rich and detailed investigation cannotbe conveyed Certification terminology thatCANNOT be incorrectly coded Data elements for public health /research not readily gathered Poor surveillance tool for interventions,trends Certification that permits identificationof areas for surveillance Wording on DC may totally change intentof certifierGoals of Death Certificate Wanted to convey some major scene /investigation points Wanted clarity in diagnosis andcertification Report details of scene and autopsyfindings Include level of investigation andtesting Standardized certification choices Synoptic reporting of pediatricsudden deathsSYNOPTIC REPORT BASIC ELEMENTSI. CauseVII. Other objective concernsII. MannerVIII. AutopsyIII. InvestigationIX. ToxicologyIV. Medical HistoryX. Ancillary StudiesV. Sleep environmentXI. Radiologic StudiesVI. Other environmentXII. CommentsDeaths should be certified in consistent way to reflect accuracy and intent ofcertifier while maximizing surveillance opportunities6

9/4/2020DEATH CERTIFICATION ANDSURVEILLANCEICD-10 CODESFOR UNEXPLAINED DEATHSS UnexpectedD IExplained NaturalExplained UnnaturalAccidentsHomicidesUnexplained despitethorough investigation(SUnexplainedID orSIDS)Undetermined forother reasons (e.g.insufficientinvestigation)“Sudden death of aninfant under one year ofage which remainsunexplained after athorough caseinvestigation, includingperformance of acomplete autopsy,examination of thedeath scene, and reviewof the clinical history.”*ICD-10CodeTitleApplies whenR95Sudden Infant Death SyndromeAge 365 days, COD is unexplained andincludes the words “sudden” and “death”R96Other sudden death, cause unknownAge 365 days, COD is unexplained andincludes the word “sudden”; excludessudden cardiac deathR99Other ill-defined and unspecifiedcauses of mortalityAny age, COD is unexplained but doesnot specifically indicate “sudden”* Willinger M, James LS, Catz C. Pediatr Pathol 1991; 11(5):677-684INCLUSION OF RISK FACTORS ON DCEFFECT OF SEQUENCE AND PART II ONCODING WHEN COD INCLUDES “SUDDEN”AND “DEATH”COD, Part I/LineASudden Unexplained Infant DeathR95Due toPart I/COD,Line BSudden infantdeath syndromeORSuddenunexplained infantdeathRisk factors:Bed sharing,prone sleep“Sharing sleep surface with two adultsLOSTPart II/CCOD“Possibleasphyxia due tobed sharingICD-10Underlying Code TitleCause CodeR95Sudden InfantDeath SyndromeR95Sudden InfantDeath SyndromeR95Sudden InfantDeath Syndrome7

9/4/2020EFFECT OF SEQUENCE AND PART II ONCODING WHEN COD INCLUDES“SUDDEN” AND “DEATH”Part I/COD, Line ASudden infantdeath syndromeORSuddenunexplained infantdeath“Due toPart I/COD, LineBPart II/CCODPossibleoverlay whilebed sharingPossibleoverlay whilebed sharingEFFECT OF PART II ON CODING WHENCAUSE OF DEATH IS “UNDETERMINED”Part I/CODICD‐10UnderlyingCause CodeCode TitleW75Accidentalsuffocation andstrangulation inBedR95Sudden InfantDeath SyndromePart II/CCODUndeterminedICD-10 CodeCode TitleR99Other ill-defined andunspecified causes ofmortalityUndeterminedRisk factor: Bed sharing, Prone sleepR99Other ill-defined andunspecified causes ofmortalityUndeterminedRisk factors: Bed sharing, Acute tracheitisJ041Acute tracheitisOverlay will be used as the Underlying Cause when it appears in Part I, but not Part II.ONE STORY, THREE CODESDIAGNOSTIC SHIFTR95 R99 W75R95R99W75ICD‐10UnderlyingCause CodePart I/CODPart II/CCODSudden infant deathsyndromeORSudden unexplainedinfant deathPossible asphyxia due to bedsharingR95Risk factor: Bed sharingR99Possible asphyxia due to bedsharingW75UndeterminedUndeterminedCode TitleSudden InfantDeathSyndromeOther ill‐definedand unspecifiedcauses ofmortalityAccidentalsuffocation andstrangulation inBedSOURCE: CDC/NCHS, National Vital Statistics System, Mortality Files https://www.cdc.gov/sids/data.htmSUDC8

9/4/2020SUDDEN UNEXPECTED PEDIATRIC DEATHSExplainedNaturalUnexplained due to lack of convincing evidence for causationExplainedUnnaturalSUDDEN UNEXPECTED PEDIATRIC d due to lack of convincing evidence for causationUndeterminedSudden Unexplained Infant DeathSudden Infant Death SyndromeSudden Unexplained Death in ChildhoodIntrinsic/Natural Factor (s)DEATH CERTIFICATION ANDSURVEILLANCE When cause of death cannot be determined,one of the following cause statements arerecommended as applicable : Unexplained Sudden Death (No Identified Intrinsic or ExtrinsicFactors). Unexplained Sudden Death (Intrinsic Factors Identified). Unexplained Sudden Death (Extrinsic Factors Identified). Unexplained Sudden Death (Intrinsic and Extrinsic FactorsIdentified). Undetermined (Not further specified). Undetermined (Insufficient Data).Multifactorial, Intrinsic and Extrinsic FactorsExtrinsic/Unnatural Factor(s)DEATH CERTIFICATION ANDSURVEILLANCE The following criteria for certification of an infant death asbeing caused by an asphyxia etiology are recommended: The case must have a complete/full autopsy. Toxicology, histology, vitreous electrolytes, cultures, andreview of medical history are to be performed, asnecessary as determined by investigation and autopsy. The infant must have obstruction of both nose andmouth or compression of the neck or chest, that isreliably witnessed or demonstrated by doll reenactment,or other reliable evidence of overlay or entrapment. Asphyxiation must be probable given infant’s age andstage of development. No reasonable competing cause of death.**To better represent the current and future data captured by R95/MH11, it is recommended that the title of thiscode be changed to “Unexplained Sudden Death in Infancy or Sudden Infant Death Syndrome.”EXTDEATH CERTIFICATION CASESTUDIESDEATH CERTIFICATION CASESTUDIES Previously healthy, term born, 3mo boy wasplaced on side and found prone on adult bed;numerous pillows and blankets nearby 4mo infant placed supine on soft beddingbetween 2 adults in queen bed; found supinehours later Medical record review showed no acute orchronic health problems Heart was enlarged at autopsy Toxicology, histology, vitreous electrolytes,cultures, radiographs, and genetic testing wereall non-contributory Review of medical records, autopsy, toxicology,cultures, vitreous electrolytes, and radiographswere all noncontributory Cardiac channelopathy genetic testing revealedmutation for prolonged QT syndrome Doll reenactment does not demonstrate obstructionof airwayINTCOD: UNEXPLAINED WITH INTRINSIC AND EXTRINSICFACTORS IDENTIFIEDMOD: UNDETERMINED Doll reenactment does not reveal overlayCOD: UNEXPLAINED WITH INTRINSIC AND EXTRINSICFACTORS IDENTIFIEDMOD: UNDETERMINED9

9/4/2020FAMILY NEEDS AND PROFESSIONALRELATIONSFAMILY NEEDS &PROFESSIONAL RELATIONSHIPSGuidance for Professional Relations Establish trauma-informed inter-agency careprotocols Training for first response teams Education for hospital teams about the localmedicolegal death investigation system Medical Training Multidisciplinary approach Access for Debriefings/Panel Discussions Develop Network of Suitable Consultants Role of child death review committeesFAMILY NEEDS &PROFESSIONAL RELATIONSHIPSFAMILY NEEDS &PROFESSIONAL RELATIONSHIPSGrief Parental Bereavement What does it look like? Hardest of Losses 5 Stages: Denial,to BearAnger, Bargaining,Depression and In the Blink of anAcceptanceEye Or First 72 Hours is Chaosfor Families Confusion, lack ofcontrol MultipleAgencies/Professionals Involved- noneof their choosingPROCE

MEDICOLEGAL DEATH INVESTIGATION MEDICOLEGAL DEATH INVESTIGATION Children are not small adults All age groups have different concerns, developmental abilities and milestones Any child death falling under the jurisdiction of a medical examiner/coroner should be in vestigated by a certified medicolegal death investi gator, independent .

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