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Advancing neonatal autopsy by strengthening physician belief and fostering effective family communication

Pediatric Research (2025)Cite this article

Abstract

With decreasing rates of neonatal autopsies, it is crucial to raise awareness among medical professionals about the fundamental information obtained from this procedure. Despite new medical advancements, an autopsy is still one of the most reliable methods to determine cause of death. Yet physicians and medical students receive limited exposure and training regarding the value of neonatal autopsies, which likely is contributing to the declining number of autopsies in the United States. Additionally, the emotional state of parents around the death of their infant can increase the discomfort healthcare professionals feel about broaching autopsy conversations with the family. Thus, it is pivotal for physicians and other clinicians to be aware of the benefits of neonatal autopsies and become comfortable communicating this information to families in a timely and appropriate manner. In this article, we provide recommendations to fill these knowledge and communication gaps by presenting common concerns and considerations surrounding autopsy discussion and how to address them. Included are example scripts for conversations that model requesting consent for autopsy at a painful time. This article is intended for neonatologists and pediatricians, as well as other healthcare professionals and trainees.

Impact

  • Neonatal autopsies are vital yet often overlooked. This article presents challenges that physicians face in discussing the autopsy process with grieving families and offers practical insights into these complex conversations.

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Fig. 1: Schematic of the benefits of neonatal autopsy.
Fig. 2: Schematic step-by-step of an ideal neonatal autopsy conversation.

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Data availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

References

  1. Kinney H. C. Reflections on a Career in Pediatric Neuropathology, with a Note of Gratitude. Annu Rev Pathol. Jul;https://doi.org/10.1146/annurev-pathmechdis-111523-023355 (2024).

  2. Hefti, M. M. et al. A Century of Germinal Matrix Intraventricular Hemorrhage in Autopsied Premature Infants: A Historical Account. Pediatr. Dev. Pathol. 19, 108–114 (2016).

    Article  PubMed  Google Scholar 

  3. Dehner, L. P. The medical autopsy: past, present, and dubious future. Mo Med. 107, 94–100 (2010).

    PubMed  PubMed Central  Google Scholar 

  4. King, L. S. & Meehan, M. C. A history of the autopsy. A review. Am. J. Pathol. 73, 514–544 (1973).

    CAS  PubMed  PubMed Central  Google Scholar 

  5. Shojania, K. G. & Burton, E. C. The vanishing nonforensic autopsy. N. Engl. J. Med 358, 873–875 (2008).

    Article  CAS  PubMed  Google Scholar 

  6. Auger, N., Bilodeau-Bertrand, M., Poissant, J. & Shah, P. S. Decreasing use of autopsy for stillbirths and infant deaths: missed opportunity. J. Perinatol. 38, 1414–1419 (2018).

    Article  PubMed  Google Scholar 

  7. Hoyert, D. L. Autopsies in the United States in 2020. Natl Vital-. Stat. Rep. 72, 1–11 (2023).

    PubMed  Google Scholar 

  8. Halac, E., Arguella, B., Bono, G. C., Cordoba, H. A. & Perez, R. Parental attitudes concerning neonatal post-mortem examination. 1261. Pediatr. Res. 39, 213–213 (1996).

    Article  Google Scholar 

  9. Lewis, C. et al. Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting. BJOG 125, 172–181 (2018).

    Article  CAS  PubMed  Google Scholar 

  10. Loughrey, M. B., McCluggage, W. G. & Toner, P. G. The declining autopsy rate and clinicians’ attitudes. Ulst. Med J. 69, 83–89 (2000).

    CAS  Google Scholar 

  11. Dell’Aquila, M. et al. Postmodernism and the decline of the clinical autopsy. Virchows Arch. 479, 861–863 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  12. Sinard, J. H. Factors affecting autopsy rates, autopsy request rates, and autopsy findings at a large academic medical center. Exp. Mol. Pathol. 70, 333–343 (2001).

    Article  CAS  PubMed  Google Scholar 

  13. Bulow, R. D., Holscher, D. L., Costa, I. G. & Boor, P. Extending the landscape of omics technologies by pathomics. NPJ Syst. Biol. Appl 9, 38 (2023).

    Article  PubMed  PubMed Central  Google Scholar 

  14. Human, M. et al. Bereaved mothers’ attitudes regarding autopsy of their stillborn baby. S Afr. J. Obstet. Gynaecol. (1999). 23, 93–96 (2017).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  15. Goldstein R. D. et al. The Grief of Mothers After the Sudden Unexpected Death of Their Infants. Pediatrics. May;141, https://doi.org/10.1542/peds.2017-3651 (2018).

  16. Wiener, L. et al. What do parents want to know when considering autopsy for their child with cancer? J. Pediatr. Hematol. Oncol. 36, 464–470 (2014).

    Article  PubMed  PubMed Central  Google Scholar 

  17. Xafis, V., Watkins, A. & Wilkinson, D. Death talk: Basic linguistic rules and communication in perinatal and paediatric end-of-life discussions. Patient Educ. Couns. 99, 555–561 (2016).

    Article  PubMed  Google Scholar 

  18. Crouch, E. E. et al. Parents’ Views on Autopsy, Organ Donation, and Research Donation After Neonatal Death. JAMA Netw. Open 6, e2341533 (2023).

    Article  PubMed  PubMed Central  Google Scholar 

  19. Lizotte M. H., et al. Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology. Pediatrics. Feb;145, https://doi.org/10.1542/peds.2019-1925 (2020)

  20. Goldstein R. D. Parental Grief. In: Duncan J. R., Byard R. W., eds. SIDS Sudden Infant and Early Childhood Death: The Past, the Present and the Future. 2018.

  21. de Sevaux, J. L. H., Nikkels, P. G. J., Lequin, M. H. & Groenendaal, F. The Value of Autopsy in Neonates in the 21st Century. Neonatology 115, 89–93 (2019).

    Article  PubMed  Google Scholar 

  22. Doughty, E. S., Verilhac, K. N., McLaren, S. & Post, M. D. The importance of fetal autopsy: An institutional review and development of best practices for reporting size and estimating gestational age at demise. Am. J. Clin. Pathol. 161, 283–288 (2024).

    Article  PubMed  Google Scholar 

  23. del Carmen, M. G. & Joffe, S. Informed consent for medical treatment and research: a review. Oncologist 10, 636–641 (2005).

    Article  PubMed  Google Scholar 

  24. Morain, S. R., Barlevy, D., Joffe, S. & Largent, E. A. Physician-Investigator, Research Coordinator, and Patient Perspectives on Dual-Role Consent in Oncology: A Qualitative Study. JAMA Netw. Open 6, e2325477 (2023).

    Article  PubMed  PubMed Central  Google Scholar 

  25. Sullivan, J. & Monagle, P. Bereaved parents’ perceptions of the autopsy examination of their child. Pediatrics 127, e1013–e1020 (2011).

    Article  PubMed  Google Scholar 

  26. Wilson, M. L. Infectious diseases and the autopsy. Clin. Infect. Dis. 43, 602–603 (2006).

    Article  PubMed  Google Scholar 

  27. McHaffie, H. E. et al. Consent to autopsy for neonates. Arch. Dis. Child Fetal Neonatal Ed. 85, F4–F7 (2001).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  28. Admon, L. K. et al. Insurance Coverage and Perinatal Health Care Use Among Low-Income Women in the US, 2015-2017. JAMA Netw. Open 4, e2034549 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  29. Breeze, A. C., Statham, H., Hackett, G. A., Jessop, F. A. & Lees, C. C. Perinatal postmortems: what is important to parents and how do they decide? Birth 39, 57–64 (2012).

    Article  PubMed  Google Scholar 

  30. Burton, J. L. & Underwood, J. Clinical, educational, and epidemiological value of autopsy. Lancet 369, 1471–1480 (2007).

    Article  PubMed  Google Scholar 

  31. Meaney, S., Gallagher, S., Lutomski, J. E. & O’Donoghue, K. Parental decision making around perinatal autopsy: a qualitative investigation. Health Expect. 18, 3160–3171 (2015).

    Article  PubMed  Google Scholar 

  32. Schirmann, A. et al. Understanding mothers’ decision-making needs for autopsy consent after stillbirth: Framework analysis of a large survey. Birth 45, 255–262 (2018).

    Article  PubMed  Google Scholar 

  33. Horey, D., Flenady, V., Conway, L., McLeod, E. & Yee Khong, T. Decision influences and aftermath: parents, stillbirth and autopsy. Health Expect. 17, 534–544 (2014).

    Article  PubMed  Google Scholar 

  34. Cronin, R. S. et al. Late stillbirth post mortem examination in New Zealand: Maternal decision-making. Aust. N.Z.J. Obstet. Gynaecol. 58, 667–673 (2018).

    Article  PubMed  Google Scholar 

  35. Ayoub, T. & Chow, J. The conventional autopsy in modern medicine. J. R. Soc. Med. 101, 177–181 (2008).

    Article  PubMed  PubMed Central  Google Scholar 

  36. Tsitsikas, D. A., Brothwell, M., Chin Aleong, J. A. & Lister, A. T. The attitudes of relatives to autopsy: a misconception. J. Clin. Pathol. 64, 412–414 (2011).

    Article  PubMed  Google Scholar 

  37. Odendaal, H. J. et al. Consent for autopsy research for unexpected death in early life. Obstet. Gynecol. 117, 167–171 (2011).

    Article  PubMed  PubMed Central  Google Scholar 

  38. Chakraborty, R. et al. A systematic review of religious beliefs about major end-of-life issues in the five major world religions. Palliat. Support Care 15, 609–622 (2017).

    Article  PubMed  PubMed Central  Google Scholar 

  39. Sajid, M. I. Autopsy in Islam: Considerations for Deceased Muslims and Their Families Currently and in the Future. Am. J. Forensic Med Pathol. 37, 29–31 (2016).

    Article  PubMed  Google Scholar 

  40. Bove, K. E. & Iery, C. Autopsy Committee CoAP. The role of the autopsy in medical malpractice cases, I: a review of 99 appeals court decisions. Arch. Pathol. Lab Med 126, 1023–1031 (2002).

    Article  PubMed  Google Scholar 

  41. Howard, R. et al. Minocycline at 2 Different Dosages vs Placebo for Patients With Mild Alzheimer Disease: A Randomized Clinical Trial. JAMA Neurol. 77, 164–174 (2020).

    Article  PubMed  Google Scholar 

  42. NIH-Grants. Rigor and Reproducibility: Back to Basics. 2021. https://www.youtube.com/watch?v=4XRonAkBWXg.

  43. Kinney, H. C. & Thach, B. T. The sudden infant death syndrome. N. Engl. J. Med 361, 795–805 (2009).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  44. Machaalani, R. & Waters, K. A. Neurochemical abnormalities in the brainstem of the Sudden Infant Death Syndrome (SIDS). Paediatr. Respir. Rev. 15, 293–300 (2014).

    PubMed  Google Scholar 

  45. Iacobuzio-Donahue, C. A. et al. Cancer biology as revealed by the research autopsy. Nat. Rev. Cancer 19, 686–697 (2019).

    Article  CAS  PubMed  Google Scholar 

  46. Scarl, R., Parkinson, B., Arole, V., Hardy, T. & Allenby, P. The hospital autopsy: the importance in keeping autopsy an option. Autops Case Rep. 12, e2021333 (2022).

    Article  PubMed  PubMed Central  Google Scholar 

  47. Al-Adnani, M. & Scheimberg, I. How can we improve the rate of autopsies among Muslims? BMJ: Br. Med. J. 332, 310 (2006).

    Article  Google Scholar 

  48. Gatrad, A. R. Muslim customs surrounding death, bereavement, postmortem examinations, and organ transplants. BMJ 309, 521–523 (1994).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  49. Weiner J. Jewish Values in Medical Decision-making for Unrepresented Patients: A Ritualized Approach. Rambam Maimonides Med J. Jul;https://doi.org/10.5041/RMMJ.10441 (2021).

  50. Lewis, C. et al. “We might get a lot more families who will agree”: Muslim and Jewish perspectives on less invasive perinatal and paediatric autopsy. PLoS One 13, e0202023 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  51. Kinzbrunner, B. M. Jewish medical ethics and end-of-life care. J. Palliat. Med 7, 558–573 (2004).

    Article  PubMed  Google Scholar 

  52. Warter I. & Warter L. A cross-cultural perspective on autopsy. Romanian J. Legal Med. https://doi.org/10.4323/rjlm.2018.76 (2018).

  53. Choudry, M., Latif, A. & Warburton, K. G. An overview of the spiritual importances of end-of-life care among the five major faiths of the United Kingdom. Clin. Med (Lond.) 18, 23–31 (2018).

    Article  PubMed  Google Scholar 

  54. Gordijn, S. J., Erwich, J. J. & Khong, T. Y. The perinatal autopsy: pertinent issues in multicultural Western Europe. Eur. J. Obstet. Gynecol. Reprod. Biol. 132, 3–7 (2007).

    Article  PubMed  Google Scholar 

  55. Ng, P. C. & Fung, G. P. G. Spiritual and cultural influences on end-of-life care and decision-making in NICU. Semin Fetal Neonatal Med 28, 101437 (2023).

    Article  PubMed  Google Scholar 

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Acknowledgements

First and foremost, we acknowledge the courage and compassion of the families who consented to autopsies, allowing us to advance medical knowledge and potentially save lives. We dedicate this article to two physicians: Dr. Joseph J. Volpe, neonatal neurologist and mentor par excellence, who has a “fine eye” toward the central role of the autopsy in clinical care and medical science and Dr. Lee J. Martin for his mentorship, devotion, and strong advocacy for human neonatal neuroscience. The authors also dedicate this article to Dr. Vittorio Gallo for his steadfast support of human-centric research and his commitment to bridging basic science with clinical investigation. His visionary leadership has advanced truly meaningful, patient-relevant research and nurtured the careers of numerous physician-scientists. The authors gratefully acknowledge the support of the Raynor Cerebellar Project (RCP), which enabled critical work on human tissues. This research aligns with RCP’s mission to forge a more direct link between funded investigations and meaningful clinical impact — with the goal of seeing a noticeable difference in patients’ lives within seven to ten years. (PI:PK).

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Authors and Affiliations

  1. Children’s National Hospital, Washington, DC, USA

    Panagiotis Kratimenos & Gabriele Simonti

  2. Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC, USA

    Panagiotis Kratimenos

  3. Department of Pathology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA

    Hannah C. Kinney

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  1. Panagiotis Kratimenos
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  2. Gabriele Simonti
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  3. Hannah C. Kinney
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Contributions

Dr. Panagiotis Kratimenos, Gabriele Simonti, and Dr. Hannah Kinney conceptualized and designed the article, drafted the initial manuscript, and critically reviewed and revised the manuscript. Dr. Panagiotis Kratimenos and Dr. Hannah Kinney revised the manuscript for important intellectual content. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

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Correspondence to Panagiotis Kratimenos or Hannah C. Kinney.

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Kratimenos, P., Simonti, G. & Kinney, H.C. Advancing neonatal autopsy by strengthening physician belief and fostering effective family communication. Pediatr Res (2025). https://doi.org/10.1038/s41390-025-04031-y

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