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Infant mode of death in the neonatal intensive care unit: A systematic scoping review

Abstract

Objective

To characterize literature that describes infant mode of death and to clarify how limitation of life-sustaining treatment (LST) is defined and rationalized.

Study design

Eligible studies were peer-reviewed, English-language, and included number of infant deaths by mode out of all infant deaths in the NICU and/or delivery room.

Result

58 included studies were primarily published in the last two decades from North American and European centers. There was variation in rates of infant mode of death by study, with some showing an increase in deaths following limitation of LST over time. Limitation of LST was defined by the intervention withheld/withdrawn, the relationship between the two practices, and prior frameworks. Themes for limiting LST included diagnoses, low predicted survival and/or quality of life, futility, and suffering.

Conclusion

Limitation of LST is a common infant mode of death, although rates, study definitions, and clinical rationale for this practice are variable.

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Fig. 1: PRISMA-ScR flow diagram.

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References

  1. CDC. Centers for Disease Control and Prevention National Center for Health Statistics. Leading causes of death and numbers of deaths, by age: United States, 1980 and 2017 https://www.cdc.gov/nchs/data/hus/2018/007.pdf: Centers for Disease Control and Prevention National Center for Health Statistics; 2018.

  2. Hug L, Alexander M, You D, Alkema L. National, regional, and global levels and trends in neonatal mortality between 1990 and 2017, with scenario-based projections to 2030: a systematic analysis. Lancet Glob Health. 2019;7:e710–e20.

    Article  PubMed  PubMed Central  Google Scholar 

  3. World Health O. World health statistics 2019: monitoring health for the SDGs, sustainable development goals. Geneva: World Health Organization; 2019; 2019.

  4. Trowbridge A, Walter JK, McConathey E, Morrison W, Feudtner C. Modes of death within a children’s hospital. Pediatrics. 2018;142.

  5. Wentlandt K, Toupin P, Novosedlik N, Le LW, Zimmermann C, Kaya E. Language used by health care professionals to describe dying at an acute care hospital. J Pain Symptom Manag. 2018;56:337–43.

    Article  Google Scholar 

  6. Duff RS, Campbell AG. Moral and ethical dilemmas in the special-care nursery. N Engl J Med. 1973;289:890–4.

    Article  CAS  PubMed  Google Scholar 

  7. Singh J, Lantos J, Meadow W. End-of-life after birth: Death and dying in a neonatal intensive care unit. Pediatrics. (Evanst) 2004;114:1620–6.

    Article  Google Scholar 

  8. Cook LA, Watchko JF. Decision making for the critically ill neonate near the end of life. J Perinatol. 1996;16:133–6.

    CAS  PubMed  Google Scholar 

  9. Verhagen AAE, Dorscheidt J, Engels B, Hubben JH, Sauer PJ. End-of-life decisions in dutch neonatal intensive care units. Arch Pediatrics Adolesc Med 2009;163:895–901.

    Article  Google Scholar 

  10. Fry JT, Matoba N, Datta A, DiGeronimo R, Coghill CH, Natarajan G, et al. Center, gestational age, and race impact end-of-life care practices at regional neonatal intensive care units. J Pediatr. 2020;217:86–91.e1.

    Article  PubMed  Google Scholar 

  11. Verhagen AA, Janvier A, Leuthner SR, Andrews B, Lagatta J, Bos AF, et al. Categorizing neonatal deaths: A cross-cultural study in the United States, Canada, and The Netherlands. J Pediatr. 2010;156:33–7.

    Article  PubMed  Google Scholar 

  12. Fajardo CA, Gonzalez S, Zambosco G, Cancela MJ, Forero LV, Venegas M, et al. End of life, death and dying in neonatal intensive care units in Latin America. Acta Paediatrica. 2012;101:609–13.

    Article  CAS  PubMed  Google Scholar 

  13. Baker JN, Levine DR, Hinds PS, Weaver MS, Cunningham MJ, Johnson L, et al. Research priorities in pediatric palliative care. J Pediatr. 2015;167:467–70 e3.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Youngblut JM, Brooten D. Perinatal and pediatric issues in palliative and end-of-life care from the 2011 Summit on the Science of Compassion. Nurs Outlook 2012;60:343–50.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018;169:467–73.

    Article  PubMed  Google Scholar 

  16. Peters M, Godfrey C, McInerney P, Munn Z, Tricco A, Khalil H. Chapter 11: Scoping Reviews. In: Z AEM, editor. JBI Manual for Evidence Synthesis 2020.

  17. Covidence systematic review software, Veritas Health Innovation, Melbourne, Australia. Available at www.covidence.org.

  18. Barney G, Glaser PD. The constant comparative method of qualitative analysis. The grounded theory review. 2008;7.

  19. Rahman S, Al Rifai H, El Ansari W, Nimeri N, El Tinay S, Salameh K, et al. A PEARL study analysis of national neonatal, early neonatal, late neonatal, and corrected neonatal mortality rates in the state of qatar during 2011: A comparison with world health statistics 2011 and Qatar’s Historic Data over a Period of 36 Years (1975–2011). J Clin Neonatol. 2012;1:195–201.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Schulz-Baldes A, Huseman D, Loui A, Dudenhausen JW, Obladen M. Neonatal end-of-life practice in a German perinatal centre. Acta Paediatr. 2007;96:681–7.

    Article  CAS  PubMed  Google Scholar 

  21. Aladangady, N., et al., Short-term outcome of treatment limitation discussions for newborn infants, a multicentre prospective observational cohort study. Arch Dis Child Fetal Neonatal Ed., 2017;102:F104–F109.

  22. Aghion A, Hussey-Gardner B, Davis NL, Falck AJ. Patient and provider factors impacting referral for neonatal organ donation. Pediatr Transplant. 2020;24:e13744. https://doi.org/10.1111/petr.13744.

  23. Tudehope DI, Papadimos E, Gibbons K. A 12-year review of neonatal deaths in delivery room in a perinatal tertiary centre. J Paediatr Child Health. 2012;48:63.

    Google Scholar 

  24. Berger TM, Hofer A. Causes and circumstances of neonatal deaths in 108 consecutive cases over a 10-year period at the Children’s Hospital of Lucerne, Switzerland. Neonatology. 2009;95:157–63.

    Article  CAS  PubMed  Google Scholar 

  25. Eventov-Friedman S, Kanevsky H, Bar-Oz B. Neonatal end-of-life care: A single-center NICU experience in Israel over a decade. Pediatrics. 2013;131:e1889–96.

    Article  PubMed  Google Scholar 

  26. Dupont‐Thibodeau A, Barrington K, Taillefer C, Janvier A, Dupont-Thibodeau A. Changes in perinatal hospital deaths occurring outside the neonatal intensive care unit over a decade. Acta Paediatrica. 2017;106:1456–9.

    Article  PubMed  Google Scholar 

  27. Garten L, Daehmlow S, Reindl T, Wendt A, Munch A, Buhrer C. End-of-life opioid administration on neonatal and pediatric intensive care units: Nurses’ attitudes and practice. Eur J Pain. 2011;15:958–65.

    Article  PubMed  Google Scholar 

  28. Snoep M, Jansen N, Groenendaal F. Cause and course of neonatal deaths in a tertiary neonatal and paediatric intensive care. Eur J Pediatr. 2016;175:1856–7.

    Google Scholar 

  29. McHugh-Strong CM, Sanders MR. Experience with newborn intensive care deaths in a tertiary setting. Am J Perinatol. 2000;17:27–33.

    Article  CAS  PubMed  Google Scholar 

  30. Nishida H, Sakamoto S. Ethical problems in neonatal intensive care unit-medical decision making on the neonate with poor prognosis. Early Hum Dev. 1992;29:403–6.

    Article  CAS  PubMed  Google Scholar 

  31. Koper JF, Bos AF, Janvier A, Verhagen AA. Dutch neonatologists have adopted a more interventionist approach to neonatal care. Acta Paediatr. 2015;104:888–93.

    Article  PubMed  Google Scholar 

  32. Ramelet AS, Bergstraesser E, Grandjean C, Dorsaz A, Fahrni-Nater P, Cignacco E, et al. Comparison of end-of-life care practices between children with complex chronic conditions and neonates dying in an ICU versus Non-ICUs: A substudy of the pediatric end-of-life care needs in Switzerland (PELICAN) Project. Pediatr Crit Care Med. 2020:E236–46.

  33. Kim M-J, Lee J-H, Lee H-D. Recent changes in end-of-life decisions for newborns in a Korean Hospital American. J Hosp Palliat Med. 2018;35:574–8.

    Article  Google Scholar 

  34. Peng NH, Chen CH, Liu HL, Lee HY, Huang H, Chang YC, et al. To explore the neonatal clinicians’ beliefs and attitudes towards caring for dying neonates in Taiwan. Intensive Care Med. 2013;39:S143.

    Google Scholar 

  35. Verhagen AA, Spijkerman J, Muskiet FD, Sauer PJ. Physician end-of-life decision-making in newborns in a less developed health care setting: Insight in considerations and implementation. Acta Paediatr. 2007;96:1437–40.

    Article  CAS  PubMed  Google Scholar 

  36. Hagen CM, Hansen TW. Deaths in a neonatal intensive care unit: A 10-year perspective. Pediatric critical care medicine: A journal of the society of critical care medicine and the World Federation of Pediatric Intensive and Critical Care Societies. 2004;5:463–8.

  37. Moura H, Costa V, Rodrigues M, Almeida F, Maia T, Guimaraes H. End of life in the neonatal intensive care unit. Clinics. 2011;66:1569–72.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Chan LC, Cheung HM, Poon TC, Ma TP, Lam HS, Ng PC. End-of-life decision-making for newborns: A 12-year experience in Hong Kong. Arch Dis Child Fetal Neonatal Ed. 2016;101:F37–42.

    Article  PubMed  Google Scholar 

  39. Younge N, Smith PB, Goldberg RN, Brandon DH, Simmons C, Cotten CM, et al. Impact of a palliative care program on end-of-life care in a neonatal intensive care unit. J Perinatol. 2015;35:218–22.

    Article  CAS  PubMed  Google Scholar 

  40. Weiner J, Sharma J, Lantos J, Kilbride H. How infants die in the neonatal intensive care unit: Trends From 1999 Through 2008. Arch Pediatrics Adolesc Med. 2011;165:630–4.

    Article  Google Scholar 

  41. de Leeuw R, de Beaufort AJ, de Kleine MJ, van Harrewijn K, Kollée LA. Foregoing intensive care treatment in newborn infants with extremely poor prognoses. A study in four neonatal intensive care units in The Netherlands. J Pediatr. 1996;129:661–6.

    Article  PubMed  Google Scholar 

  42. Wilkinson DJ, Fitzsimons JJ, Dargaville PA, T Campbell N, Loughnan PM, McDougall PN, et al. Death in the neonatal intensive care unit: changing patterns of end of life care over two decades. Arch Dis Child-Fetal Neonatal Ed. 2006;91:F268–F71.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  43. Marçola L, De Barbosa SMM, Zoboli I, Polastrini RTV, Ceccon MEJ. Analysis of death and palliative care in a neonatal intensive care unit. Rev Paul de Pediatr. 2017;35:125–9.

    Article  Google Scholar 

  44. Ng SKF, Keenan N, Swart S, Berry MJ. Palliative care in a tertiary neonatal intensive care unit: a 10-year review [published online ahead of print, 2018 Nov 22]. BMJ Support Palliat Care. 2018;bmjspcare-2018-001538. p 1–5. https://doi.org/10.1136/bmjspcare-2018-001538.

  45. Caniano DA, Hazebroek FW, DenBesten KE, Tibboel D. End-of-life decisions for surgical neonates: Experience in The Netherlands and United States. J Pediatr Surg. 1995;30:1420–4.

    Article  CAS  PubMed  Google Scholar 

  46. Arlettaz R, Mieth D, Bucher HU, Duc G, Fauchere JC. End-of-life decisions in delivery room and neonatal intensive care unit. Acta Paediatrica. 2005;94:1626–31.

    Article  PubMed  Google Scholar 

  47. Verhagen AA, van der Hoeven MA, van Meerveld RC, Sauer PJ. Physician medical decision-making at the end of life in newborns: insight into implementation at 2 Dutch centers. Pediatrics. 2007;120:e20–8.

    Article  PubMed  Google Scholar 

  48. Kelly NP, Rowley SR, Harding JE. Death in neonatal intensive-care. J Paediatr Child Health. 1994;30:419–22.

    Article  CAS  PubMed  Google Scholar 

  49. Barton L, Hodgman JE. The contribution of withholding or withdrawing care to newborn mortality. Pediatrics. 2005;116:1487–91.

    Article  PubMed  Google Scholar 

  50. da Costa DE, Ghazal H, Al Khusaiby S. Do not resuscitate orders and ethical decisions in a neonatal intensive care unit in a Muslim community. Neonatal Intensive Care. 2003;16:35–9.

    Google Scholar 

  51. Orfali K. Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units. Soc Sci Med. (1982) 2004;58:2009–22.

    Article  Google Scholar 

  52. Verhagen AA, Dorscheidt JH, Engels B, Hubben JH, Sauer PJ. Analgesics, sedatives and neuromuscular blockers as part of end-of-life decisions in Dutch NICUs. Arch Dis Child Fetal Neonatal Ed. 2009;94:F434–8.

    Article  CAS  PubMed  Google Scholar 

  53. Wall SN, Partridge JC. Death in the intensive care nursery: Physician practice of withdrawing and withholding life support. Pediatrics. 1997;99:64–70.

    Article  CAS  PubMed  Google Scholar 

  54. Whitelaw A. Death as an option in neonatal intensive care. Lancet. (Lond, Engl) 1986;2:328–31.

    Article  CAS  Google Scholar 

  55. Pearson EB, Bose CL, Kraybill EN. Decisions about futile treatment in an intensive care nursery. North Carol Med J. 1995;56:462–6.

    CAS  Google Scholar 

  56. Berner ME, Rimensberger PC, Hüppi PS, Pfister RE. National ethical directives and practical aspects of forgoing life-sustaining treatment in newborn infants in a Swiss intensive care unit. Swiss Med Wkly. 2006;136:597–602.

    PubMed  Google Scholar 

  57. Hellmann J, Knighton R, Lee SK, Shah PS, Andrews W, Payot A, et al. Neonatal deaths: Prospective exploration of the causes and process of end-of-life decisions. Arch Dis Child: Fetal Neonatal Ed. 2016;101:F102–F7.

    Article  Google Scholar 

  58. Section On H, Palliative M, Committee On Hospital C. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. (Evanst) 2013;132:966–72.

    Article  Google Scholar 

  59. Rogers M, Meier DE, Heitner R, Aldridge M, Hill Spragens L, Kelley A, et al. The National palliative care registry: A decade of supporting growth and sustainability of palliative care programs. J Palliat Med. 2019;22:126–1031.

    Article  Google Scholar 

  60. Wang CH, Du LZ, Ma XL, Shi LP, Tong XM, Liu H, et al. Analysis of in-hospital neonatal death in the tertiary neonatal intensive care unit in China: A multicenter retrospective study. Chin Med J. (Engl) 2016;129:2652–8.

    Article  Google Scholar 

  61. Beauchamp TL. Principles of biomedical ethics. Eighth edition. ed. Childress JF, editor. New York, NY: Oxford University Press; 2019.

  62. Diekema DS, Mercurio MR, Adam MB. Clinical ethics in pediatrics: a case-based textbook. Cambridge: Cambridge University Press; 2011.

  63. Wilkinson D, Savulescu J. A costly separation between withdrawing and withholding treatment in intensive care. Bioethics. 2014;28:127–37.

    Article  PubMed  Google Scholar 

  64. Weise KL, Okun AL, Carter BS, Christian CW. Guidance on forgoing life-sustaining medical treatment. Pediatrics. (Evanst) 2017;140:e20171905.

    Article  Google Scholar 

  65. Feltman DM, Du H, Leuthner SR. Survey of neonatologists’ attitudes toward limiting life-sustaining treatments in the neonatal intensive care unit. J Perinatol. 2012;32:886–92.

    Article  CAS  PubMed  Google Scholar 

  66. Yotani N, Nabetani M, Feudtner C, Honda J, Kizawa Y, Iijima K. Withholding and withdrawal of life-sustaining treatments for neonate in Japan: Are hospital practices associated with physicians’ beliefs, practices, or perceived barriers. Early Hum Dev. 2020;141:104931.

    Article  CAS  PubMed  Google Scholar 

  67. Rebagliato M, Cuttini M, Broggin L, Berbik I, de Vonderweid U, Hansen G, et al. Neonatal end-of-life decision making: Physicians’ attitudes and relationship with self-reported practices in 10 European countries. JAMA: J Am Med Assoc. 2000;284:2451–9.

    Article  CAS  Google Scholar 

  68. Lonergan B, Wright A, Markham R, Machin L. Time-limited trials: A qualitative study exploring the role of time in decision-making on the Intensive Care Unit. Clin Ethics. 2020;15:11–6.

    Article  Google Scholar 

  69. Rysavy MA, Horbar JD, Bell EF, Li L, Greenberg LT, Tyson JE, et al. Assessment of an updated neonatal research network extremely preterm birth outcome model in the Vermont Oxford network. JAMA Pediatr. 2020;174:e196294–e.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Richardson DK, Corcoran JD, Escobar GJ, Lee SK. SNAP-II and SNAPPE-II: Simplified newborn illness severity and mortality risk scores. J Pediatr. 2001;138:92–100.

    Article  CAS  PubMed  Google Scholar 

  71. Kukora S, Gollehon N, Weiner G, Laventhal N. Prognostic accuracy of antenatal neonatology consultation. J Perinatol. 2017;37:27–31.

    Article  CAS  PubMed  Google Scholar 

  72. Meadow W, Lagatta J, Andrews B, Caldarelli L, Keiser A, Laporte J, et al. Just, in time: Ethical implications of serial predictions of death and morbidity for ventilated premature infants. Pediatrics (Evanst) 2008;121:732–40.

    Article  Google Scholar 

  73. Stevens SM, Richardson DK, Gray JE, Goldman DA, McCormick MC. Estimating neonatal mortality risk: An analysis of clinicians’ judgments. Pediatrics. (Evanst) 1994;93:945–50.

    Article  CAS  Google Scholar 

  74. Shapiro N, Wachtel EV, Bailey SM, Espiritu MM. Implicit physician biases in periviability counseling. J Pediatr. 2018;197:109–15.e1.

    Article  PubMed  Google Scholar 

  75. Haward MF, Murphy RO, Lorenz JM. Message framing and perinatal decisions. Pediatrics. (Evanst) 2008;122:109–18.

    Article  Google Scholar 

  76. Boardman FK. Whose life is worth preserving? Disabled people and the expressivist objection to neonatology. Acta Paediatrica. 2021;110:391–3.

    Article  PubMed  Google Scholar 

  77. Adams SY, Tucker R, Clark MA, Lechner BE. “Quality of life”: Parent and neonatologist perspectives. J Perinatol. 2020;40:1809–20.

    Article  PubMed  PubMed Central  Google Scholar 

  78. Saigal S, Stoskopf BL, Feeny D, Furlong W, Burrows E, Rosenbaum PL, et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA: J Am Med Assoc. 1999;281:1991–7.

    Article  CAS  Google Scholar 

  79. Saigal S. Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA: J Am Med Assoc. 1996;276:453–9.

    Article  CAS  Google Scholar 

  80. Lantos JD. Neonatal bioethics: the moral challenges of medical innovation. Meadow W, editor. Baltimore: Johns Hopkins University Press; 2006.

  81. Stoll BJ, Hansen NI, Bell EF, Walsh MC, Carlo WA, Shankaran S, et al. Trends in care practices, morbidity, and mortality of extremely preterm neonates, 1993-2012. JAMA: J Am Med Assoc. 2015;314:1039–51.

    Article  CAS  Google Scholar 

  82. Pyle AK, Fleischman AR, Hardart G, Mercurio MR. Management options and parental voice in the treatment of trisomy 13 and 18. J Perinatol. 2018;38:1135–43.

    Article  PubMed  Google Scholar 

  83. Frader J, Truog RD, Brett AS. The problem with futility. N. Engl J Med. 1992;326:1560–4.

    Article  PubMed  Google Scholar 

  84. Bosslet GT, Pope TM, Rubenfeld GD, Lo B, Truog RD, Rushton CH, et al. An Official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. Am J Resp Crit Care Med. 2015;191:1318–30.

    Article  PubMed  Google Scholar 

  85. Cassell EJ. The nature of suffering: and the goals of medicine. New York: Oxford University Press; 1991.

  86. Salter EK. The new futility? The rhetoric and role of “suffering” in pediatric decision-making. Nurs Ethics. 2020;27:16–27.

    Article  PubMed  Google Scholar 

  87. Fortney CA, Baughcum AE, Moscato EL, Winning AM, Keim MC, Gerhardt CA. Bereaved parents’ perceptions of infant suffering in the NICU. J Pain Symptom Manag. 2020;59:1001–8.

    Article  Google Scholar 

  88. Baughcum AE, Fortney CA, Winning AM, Dunnells ZDO, Humphrey LM, Gerhardt CA. Healthcare satisfaction and unmet needs among bereaved parents in the NICU. Adv Neonatal Care. 2020;20:118–26.

    Article  PubMed  Google Scholar 

  89. Clark, OE, et al., Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU. J Pain Symptom Manage. 2021;62:e20–e27.

  90. James JMD, Munson DMD, DeMauro SBMDM, Langer JCMS, Dworetz ARMD, Natarajan GMD, et al. Outcomes of Preterm Infants following Discussions about Withdrawal or Withholding of Life Support. J Pediatr. 2017;190:118–23.e4.

    Article  PubMed  PubMed Central  Google Scholar 

  91. Natarajan G, Mathur A, Zaniletti I, DiGeronimo R, Lee K-S, Rao R, et al. Withdrawal of Life-Support in Neonatal Hypoxic-Ischemic Encephalopathy. Pediatr Neurol. 2019;91:20–6.

    Article  PubMed  Google Scholar 

  92. Campbell AG, Lloyd DJ, Duffty P. Treatment dilemmas in neonatal care: who should survive and who should decide? Ann N. Y Acad Sci. 1988;530:92–103.

    Article  CAS  PubMed  Google Scholar 

  93. Airede KI. Should we resuscitate? Ethical dilemmas. Ann Trop Paediatr. 1991;11:169–74.

    Article  CAS  PubMed  Google Scholar 

  94. Ryan CA, Byrne P, Kuhn S, Tyebkhan J. No resuscitation and withdrawal of therapy in a neonatal and a pediatric intensive care unit in Canada. J Pediatr. 1993;123:534–8.

    Article  CAS  PubMed  Google Scholar 

  95. Moseley KL, Church A, Hempel B, Yuan H, Goold SD, Freed GL. End-of-life choices for African-American and white infants in a neonatal intensive-care unit: A pilot study. J Natl Med Assoc. 2004;96:933–7.

    PubMed  PubMed Central  Google Scholar 

  96. Roy R, Aladangady N, Costeloe K, Larcher V. Decision making and modes of death in a tertiary neonatal unit. Arch Dis Child Fetal Neonatal Ed. 2004;89:F527–30.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  97. Simpson CDA, Ye XAY, Hellmann J, Tomlinson C. Trends in cause-specific mortality at a Canadian outborn NICU. Pediatrics. 2010;126:E1538–E44.

    Article  PubMed  Google Scholar 

  98. Fontana MS, Farrell C, Gauvin F, Lacroix J, Janvier A. Modes of death in pediatrics: Differences in the ethical approach in neonatal and pediatric patients. J Pediatr. 2013;162:1107–11.

    Article  PubMed  Google Scholar 

  99. Samsel C, Lechner BE. End-of-life care in a regional level IV neonatal intensive care unit after implementation of a palliative care initiative. J Perinatol. 2015;35:223–8.

    Article  CAS  PubMed  Google Scholar 

  100. Weiner J, Sharma J, Lantos J, Kilbride H. Does diagnosis influence end-of-life decisions in the neonatal intensive care unit? J Perinatol. 2015;35:151–4.

    Article  CAS  PubMed  Google Scholar 

  101. Lam V, Kain N, Joynt C, van Manen MA. A descriptive report of end-of-life care practices occurring in two neonatal intensive care units. Palliat Med. 2016;30:971–8.

    Article  PubMed  Google Scholar 

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Acknowledgements

We would like to thank Chloe Rotman, MLIS, Manager of Library Services at Boston Children’s Hospital, for her assistance with the early phases of this scoping review, including search strategy and Covidence.

Funding

Cummings is supported by a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) of the National Institutes of Health under award number R01HD094794 (CC PI). This funder played no role in the study design, analysis, or preparation of this article. The other authors received no other external funding for this study.

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ML and RD conceptualized and designed the study, designed the data collection protocol, collected the data, carried out the qualitative analyses, drafted the initial manuscript, and reviewed and revised the manuscript. CC and JW conceptualized and designed the study, supervised the data collection and qualitative analyses, and critically reviewed the manuscript for 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 Matthew Lin.

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Lin, M., Deming, R., Wolfe, J. et al. Infant mode of death in the neonatal intensive care unit: A systematic scoping review. J Perinatol 42, 551–568 (2022). https://doi.org/10.1038/s41372-022-01319-3

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