When an infant dies, it's important for medical and forensic professionals to use consistent terminology to describe and classify the death, not only for public policy but as a way to communicate with grieving families with accuracy and empathy.
The American Academy of Pediatrics calls for a consensus on terminology to describe infant deaths within a clinical report, "Half Century Since SIDS: A Reappraisal of Terminology," published in the October 2021 Pediatrics.
The report describes the history and debate over the term, "Sudden Infant Death Syndrome," or SIDS, which has been used since 1969 to describe deaths of young children.
"Throughout the years, many new terms have been used to classify infant deaths to reflect whether they are believed to be accidental or undetermined or fall under other categories," said Dr. Vincent J. Palusci, MD, MS, FAAP, a co-author of the report.
"This has led to inconsistencies in terms used, which in turn increases the chances of communication errors and misunderstandings. Our goal is to establish uniform and shared terminology so that we can best support families after their loss and work to prevent more deaths."
The clinical report was developed by members of the AAP Task Force on Sudden Infant Death Syndrome; AAP Council on Child Abuse and Neglect; AAP Council on Injury, Violence, and Poison Prevention; AAP Section on Child Death Review and Prevention, and the National Association of Medical Examiners.
Over the years, U.S. medical examiners and coroners have used terms to describe deaths that include undetermined, unexplained, and unknown cause, as well as sudden infant death syndrome, SIDS, sudden unexplained (or unexpected) infant death, SUID, and unintentional suffocation or asphyxia in an unsafe sleeping environment.
The inconsistent terminology can affect the development of public policies designed to reduce sleep-related infant deaths, including child product safety legislation and regulation focused on promoting safe sleep environments. The terminology may also have unintended consequences for prevention messages and interventions for parents and caregivers.
The AAP recommends:
The rapid adoption of terminology recommended by the National Association of Medical Examiners (NAME) Panel on Sudden Unexpected Death in Pediatrics. This group included forensic pathologists, pediatricians, and federal liaisons who agreed on definitive terminology. The group recommends the use of "unexplained sudden death in infancy" instead of "sudden infant death syndrome" in death certification, along with specification on whether there were intrinsic and extrinsic risk factors that played a role in the death.
Forensic and health care professionals should incorporate terminology that avoids placing blame or increasing feelings of guilt on the part of a caregiver suffering a tragic loss, and objectively and accurately describes the circumstances around an infant's death.
The medical examiner or coroner needs to effectively communicate investigation and autopsy findings and explain why the conclusions about cause of death may be inconclusive.
Forensic, pediatric, and public health communities need consistent communication tools to allow them to acknowledge unsafe behaviors, such as bedsharing or the presence of hazards, including crib bumpers or soft bedding, without assigning blame or inciting feelings of guilt.
Medical clinicians must effectively communicate with families the risks identified in the prenatal period, including smoking and drinking during pregnancy, as well as unsafe sleep practices that pose a risk to surviving children.
"There is never an easy way to describe a baby's tragic death, regardless of cause," said Dr. Benjamin Hoffman, co-author of the report and chair of the AAP Council on Injury, Violence and Poison Prevention. "But we can strive for practical ways to share information in an objective manner without unintentionally adding to a grieving family's pain."