PC3031: My Patient Died Suddenly and Unexpectedly. Now, What?

Background: Each year, thousands of children die unexpectedly. These include, but are not limited to, ~3500 sudden unexpected infant deaths, ~300 unexplained deaths in childhood, and ~450 children with epilepsy, resulting in >225,000 life-years lost annually.1 Sudden unexplained death in childhood (SUDC) is the death of a child 12 months or older that remains unexplained after a thorough autopsy and investigation.2 The majority of SUDC cases are previously healthy toddlers, aged 1 to 4 years. It is the 5th leading category of death in children ages 1 to 4 and is associated with male predominance, unexpected sleep-related deaths in winter, and febrile seizures.2-7
Of the many professionals involved in the death investigation, the pediatrician is often the only one who has a pre-existing relationship with the family, placing them in a unique role to support the family during this traumatic and often chaotic time. This role in the death investigation process may be uncharted territory to most pediatricians, but it is crucial in assisting the investigation to both obtain the most accurate cause of death and to support the family in their mental health and medical care needs.7

Methods: A convenience sample of bereaved parents registered with the SUDC Foundation (N=243) participated in a cross-sectional survey regarding coping skills following the death of their child and current mental health quality measures. A subset of this sample (n=190) also answered questions regarding their interactions with their pediatrician following their child’s death and were stratified by time since their child’s death (0-24 months, 2-5 years, >5 years).

Results: Thirty percent (49/156) reported they did not receive bereavement resources from any professional involved after their child’s death. Sixty percent (114/156) reported proactive contact from their pediatrician after their child’s death and 58% (110/157) reported feeling supported by their pediatrician. Proactive contact from their pediatrician and feeling supported were significantly correlated (r=.420, p<.001). Fifty-one percent (95/186) reported their pediatrician offered to meet with them after their child’s death, and over 90% reported the meeting to be meaningful. Bereaved parents in the 2-5 years cohort who described feeling supported by their pediatrician reported lower measures of both anxiety (GAD-7, p=.025) and avoidance behavior (GRAQ, p=.04).

Conclusion: The role of the pediatrician during a child’s life is well recognized, but the role of the pediatrician in supporting parents and surviving siblings after the of the death of a child is less understood and discussed. In collaboration with AAP members, the National Association of Medical Examiners Panel on Sudden Unexpected Pediatric Deaths studied the crucial role that pediatricians have after the sudden death of a child. The resultant publication, Unexplained Pediatric Deaths: Investigation, Certification and Family Needs provides pediatricians thorough guidance when providing care for affected families.7