The investigation of sudden unexpected deaths in infancy in Australia.

Abstract

The term “sudden unexpected death in infancy” (SUDI) encompasses all deaths and collapses leading to deaths of infants (to twelve months of age) that would not have been reasonably expected 24 hours prior to the event and for which there was no apparent pre-existing medical cause of death, regardless of whether the death was subsequently explained or not. Sudden infant death syndrome (SIDS) refers to cases that remain unexplained after a complete investigation, including history taking, death scene investigation, and autopsy.1 SUDI requires thorough investigation according to international standards and guidelines.2-4 Determining whether a death can be explained is important for parents and their future children, as well as for prevention, public health policy, and research into the risk factors for SUDI. How well these standards are implemented in Australia is unknown. Doctors in all states and territories are legally required to report SUDI to the coroner, who has the statutory duty to investigate. During 2005–2015, 113 to 143 deaths classified as SUDI were reported each year; most were deemed preventable because known risk factors were involved, such as prone or unsafe sleeping practices or parental smoking.5 In 2018, we surveyed Australian chief state coroners and their equivalents about the SUDI investigation process. The survey was developed with advice from the National Scientific Advisory Group of Red Nose Australia (https://rednose.org.au), and the questionnaire was piloted with two coroners. The final survey was forwarded via REDCap, a secure web application, to the chief coroners or their equivalents in each of the eight states and territories. The questionnaire included items on the definition of SUDI, first responders, death scene investigation, medical and social history collection, post mortem examination, communication with parents, and the proportions of cases in which the cause of death could be determined (Supporting Information). The University of Sydney Human Research Ethics Committee approved the study (project number: 2017/506). We received responses from all eight jurisdictions during May 2018 – October 2019, either from the chief state coroners or their equivalents or from their principal registrar or designated paediatric/forensic pathologist. We assumed that responses reflected actual practice. The responses indicated considerable variation in how SUDI is investigated, but the process is predominantly led by police, including the recording of the medical history, the death scene investigation, and (in some cases) the early communication of post mortem findings to parents (Box 1). Four models of SUDI investigation were identified by a 2015 systematic review: coroner/medical examiner-led, health care-led, police-led, and a joint agency approach. The authors found that the police-led model does not meet the minimum standards required for a SUDI investigation.4 In the United Kingdom, the Kennedy report (second edition, 2016) defined the requirements for appropriate investigation of SUDI1 (Box 2). Each part of the process requires a standardised protocol, but also the flexibility to add new items; for example, the medical history should be recorded by a health care professional, preferably a paediatrician, using a standardised questionnaire. Most Australian jurisdictions rely on the limited histories collected by the police. Further, the paediatrician who collects the history should be knowledgeable about SUDI, sensitive to the parents’ situation, sufficiently competent and confident to deal with unexpected infant deaths, and with sufficient regular SUDI experience to maintain these skills. The essential components of the required history and post mortem examination have been outlined.7 A genetic history is increasingly important as new channelopathies (most with dominant inheritance, with implications for first-degree relatives) and other genetic causes of SUDI are discovered.8 The SUDI investigation process in Australia should be upgraded to international standards, as every family has the right to have their child's death properly investigated. Parents are largely unaware that this often does not happen. Led by our coroners and supported by multi-agency collaboration, it is time to correct this situation. We thank the chief state coroners or equivalents and their representatives for completing the questionnaire. We thank Red Nose Australia and their National Scientific Advisory Group for their help in refining the questionnaire, and the coroners who tested the survey and provided feedback. Open access publishing facilitated by The University of Sydney, as part of the Wiley – The University of Sydney agreement via the Council of Australian University Librarians. No relevant disclosures. Appendix S1 Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.