The death of a child, whether it be sudden and unexpected or after a protracted illness, frequently leaves the family with questions that need to be addressed as part of the grieving process. These may be in relation to the cause of death or concerns about the provision of medical care which can only be addressed by a thorough case review including, ideally, the findings from a postmortem examination. There is a widespread belief that examination of the morbid anatomy and histology at autopsy provides the definitive opinion about both the cause and mechanism of death in children. However, there are some caveats that need to be taken into account. First, there is limited experience and expertise available in pediatric pathology outside tertiary care centers which can lead to errors when the autopsy is performed by pathologists who deal mainly with adult cases. Second, the absence of clinical input into the events prior to death examination can have an impact on the quality and accuracy of the conclusions of the final death report. Therefore, it is important to have the involvement of qualified pediatric pathologists particularly when the clinical history is suggestive that the death followed a disease process that is common to children rather than adults. Indeed, there is a strong argument to made that an autopsy after the death of a child should only be performed by a qualified pediatric pathologist. The rationale for this includes accuracy in correctly identifying morbid anatomy in cases of complex congenital heart disease, reducing the rate of incorrectly assigning a diagnosis of sudden infant death syndrome (SIDS) in infants where there is the absence of either abnormal morbid anatomy or histologic findings. In addition, clinically relevant information preceding the death of a child can be very different from adults.
In our experience, input from pediatric specialist physicians as part of the autopsy review in the form of a clinicopathologic correlation (CPC) enhances the accuracy and learnings of both the clinicians and pathologists. This, in a brief narrative format, can be included in the final postmortem report rather than a list of abnormal anatomical findings.
In this article, we will draw our experience using the CPC as part of the death review process in the PICU at the Hospital for Sick Children as well the format used at the Pediatric Death Review Committee (PDRC) in the Province of Ontario, which provides a peer review process for pediatric deaths referred to the coroner’s office.
PEDIATRIC AUTOPSY AND CLINICOPATHOLOGIC CORRELATION
Information obtained through a postmortem examination is an important part of the investigation after the death of a child. This remains true despite major enhancements in imaging technology (CT, MRI) that has resulted in improved accuracy in premortem diagnosis.
Imaging technology is now increasingly integrated into the postmortem examination process to document pathologic abnormalities such as bone fractures. Although information obtained through this testing is valuable, dissection and detailed examination of anatomical structures remain an important part of any quality assurance process for a tertiary care pediatric hospital and particularly the PICU (1). The autopsy and CPC also provides the best opportunity for families to obtain answers to concerns they may have about the process of care as well as providing an explanation of why their child died both and unresolved diagnostic issues which are important parts of review and counseling. Apart from situations where an autopsy is mandated as part of a coroner or medical examiner death investigation, these are important reasons why the intensivist should request the family’s consent for postmortem examination, while recognizing that there may be situations where for cultural or religious reasons, this will be refused. In the event that the family is reluctant to consent an alternative option to request a limited autopsy with examination specifically of the organs of interest. There may also be situations where performing a comprehensive autopsy may be made more difficult for the pathologist by the stipulation on the consent that all tissue must be returned to the body at the end of the examination rather than retaining samples for fixation before histology review. This is particularly challenging for the pathologist when examining the brain.
Autopsy information forms a major part of the mortality review process for a tertiary care PICU. The discussion is enhanced by having the pediatric pathologist present the findings at morbidity and mortality rounds, so that a comprehensive CPC can take place in the presence of the multidisciplinary team and provides an important opportunity for enhancing medical education. When a child has died following a protracted illness with an extended hospital or PICU stay, it would be unusual to discover an unexpected major abnormality that contributed to the death. This should not be regarded as a “negative” autopsy but rather may directly contribute an assurance to the team and family that medical management was appropriate. However, it is important to make the distinction at these discussions between a previously unidentified abnormality contributing to death versus minor abnormal findings that had no impact on the outcome (2). An example would be the finding of Gram-negative organisms cultured from a tracheal aspirate of a child after a prolonged period of intubation and mechanical ventilation.
THE INVESTIGATION OF SUDDEN AND UNEXPECTED DEATH IN CHILDREN: THE PEDIATRIC DEATH REVIEW PROCESS
The sudden and unexpected death of a child not known to be previously ill is fortunately a rare event but demands a thorough investigation. In most juristrictions, there is a mandatory reporting and investigation of any such death as well as any case of suspected homicide, suicide, the death of a child in a residential placement, where there has been involvement, prior to death, of a child protection agency or where there is any concern about abuse or neglect. In the Province of Ontario where the death of a child has resulted from any cause or causes listed above, there is an obligation to notify the Office of the Chief Coroner. In the event that the death occurs in a hospital, an investigating coroner, who in Ontario is a qualified medical practitioner, is assigned to review the hospital record and, after speaking with the family, he or she decides on whether or not an autopsy is warranted. This would be performed by an Ontario Forensic Pathology Service–appointed pathologist with expertise in pediatric pathology. In the event that a sudden and unexpected death occurs outside hospital, the investigation includes a review of the death scene, police investigation, and any previous interactions with child protection agencies (3, 4). In infants found without vital signs in the home, the sleeping position at the time of death is documented (prone vs supine) as well as any case where cosleeping was thought to be a contributing factor. The system in Ontario differs from other provinces in Canada in that all coroners are medically qualified, whereas other provinces may use the medical examiner system, where death investigations are carried out by a forensic pathologist. The size of the province together with the geographical spread of the population means that pediatric pathology expertise only exists in the province’s four tertiary care pediatric centers. For the purposes of peer review, findings and tissue samples are frequently referred to these centers to improve diagnostic accuracy. In a further step to enhance the death investigation process, the Office of the Chief Coroner established a multidisciplinary PDRC in 1985 which has now evolved into a process to review all sudden and unexpected deaths of children under 5 years old.
The committee’s mandate is to provide a multidisciplinary peer review process recognizing that most coroners and pathologists have limited experience in dealing with complex pediatric cases. Formerly, the absence of a process, which included the extra scrutiny of a CPC review, had sometimes resulted in diagnostic errors particularly in over diagnosing SIDS in infants where there was a paucity of anatomical findings and no adequate death scene investigation.
The PDRC committee consists of a pediatric pathologist, pediatric intensivist, neonatologist, and pediatricians from nontertiary care centers. The committee receives referrals where the cases were medically complex or following requests from the family for independent peer review because of concerns about the medical care. Cases also came to light where there had been deaths of children who were under the care of, or had previous contact with, child protection agencies. Because of this child, protection experts and police child investigation experts were added to the committee. The process followed is to review all the documentation available including the investigating coroner’s report, copy of the hospital record, family physician’s records, x-ray, death scene reports, and photographs together with the autopsy report and correspondence with the family. If necessary tissue samples are obtained for secondary review by the pediatric pathologist on the committee. In cases where death occurs during hospitalization, the hospital is also asked to provide details for their own morbidity and mortality review of the case. After all material has been reviewed, the case is discussed and, where the committee has concerns about lapses in the quality of care, recommendations for improvement are addressed to individual physicians or hospitals. In situations where substandard care has been adjudged to be particularly egregious, there may be a recommendation that the committee notifies the province’s medical regulatory/licencing authority. Each year, the PDRC and Death Under Five Committee produces a combined annual report highlighting topics of deaths in children discussed over the year (5). Examples of the common clinical scenarios discussed by the committee are listed in Table 1.
Pediatric Death Review by expert pathologists and clinicians is now widely accepted as an important advance in quality of pediatric care. The format differs in various juristrictions (6). New Zealand has a national process for child death review (7), whereas in Australia it is state based (8). The United States has a National Child Death Review Case Reporting System which is web based with participation by 35 of 50 U.S. states (9). In the United Kingdom, deaths in children are reviewed by Child Death Overview Panels, geographically located throughout the country and these report to Local Safeguarding Children Boards (10). The PDRC in Ontario is different from other jurisdictions in that it only reviews deaths referred to the coroner’s office for investigation, whereas many other child death review committees collect data on all deaths in children with a focus on nonaccidental injury and maltreatment. It performs an important role in improving the quality of pediatric care in the province of Ontario, an ongoing quality assurance process for hospitals, and is an important benchmark in raising the standard of the investigation after deaths in children.
Investigation after death of a child, whether it is after a protracted illness and hospitalization or as a sudden and unexpected event, is an important part of bringing closure for both families and caregivers. Although every death is a tragedy for the family, it also provides an opportunity for the care givers to interrogate the quality of care delivered. The quality of the death review is enhanced when the multidisciplinary format is used combining the expertise of both clinicians and pathologists.
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5. Paediatric Death Review Committee and Deaths Under Five Ontario Ministry of Community Safety and Correctional Services: Office of the Chief Coroner: Paediatric Death Review Committee and Deaths Under Five Committee 2016 Report. 2016. Available at: http://www.mcscs.jus.gov.on.ca
. Accessed June 20, 2018
6. Fraser J, Sidebotham P, Frederick J, et al. Learning from child death review in the USA, England, Australia, and New Zealand. Lancet 2014; 384:894–903
7. Health Quality & Safety Commission New Zealand:. Child and Youth Mortality Review Committee. Available at: http://www.hqsc.govt.nz
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9. The National Center for Fatality Review and Prevention. Available at: http://www.ncfrp.org
. Accessed June 20, 2018