Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

Shared decision making for infants born at the threshold of viability: a prognosis-based guideline

Abstract

Objective:

Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline.

Study Design:

We followed a five step approach and used the AGREE II framework: (1) systematic review and critical appraisal of published guidelines; (2) identification of key medical factors for decision making; (3) systematic reviews; (4) creation of a multi-disciplinary working group and (5) external consultation and appraisal.

Result:

No published guideline met high-quality appraisal criteria. Survival, neurodevelopmental disability, quality of life of child and parents, and maternal mortality and risk of long-term morbidity were identified as key for quality decision-making. Eighteen stakeholders (including parents) advocated for the incorporation of parents’ values and preferences in the process.

Conclusion:

A novel framework, based on prognosis, was generated to guide when early intensive and palliative care may both be offered to expectant parents. Pre-implementation assessment is underway to identify barriers and facilitators to putting in practice.

Your institute does not have access to this article

Relevant articles

Open Access articles citing this article.

Access options

Buy article

Get time limited or full article access on ReadCube.

$32.00

All prices are NET prices.

References

  1. Kalish RB, Thaler HT, Chasen ST, Gupta M, Berman SJ, Rosenwaks Z et al. First- and second-trimester ultrasound assessment of gestational age. Am J Obstet Gynecol 2004; 191 (3): 975–978.

    Article  PubMed  Google Scholar 

  2. Callen PW . The obstetric ultrasound examination. Ultrasonography in Obstetrics and Gynecology. 5th edn Saunders Elsevier, 2008; 3–25.

    Chapter  Google Scholar 

  3. Jimenez JM, Tyson JE, Reisch JS . Clinical measures of gestational age in normal pregnancies. Obstet Gynecol 1983; 61 (4): 438–443.

    CAS  PubMed  Google Scholar 

  4. Gjessing HK, Skjaerven R, Wilcox AJ . Errors in gestational age: evidence of bleeding early in pregnancy. Am J Public Health 1999; 89 (2): 213–218.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  5. Tyson JE, Parikh NA, Langer J, Green C, Higgins RD . Intensive care for extreme prematurity—moving beyond gestational age. N Engl J Med 2008; 358 (16): 1672–1681.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  6. Wilkinson AR, Ahluwalia J, Cole A, Crawford D, Fyle J, Gordon A et al. Management of babies born extremely preterm at less than 26 weeks of gestation: a framework for clinical practice at the time of birth. Arch Dis Child Fetal Neonatal Ed 2009; 94 (1): F2–F5.

    Article  PubMed  Google Scholar 

  7. Moore GP, Lemyre B, Barrowman N, Daboval T . Neurodevelopmental outcomes at 4 to 8 years of children born at 22 to 25 weeks' gestational age: a meta-analysis. JAMA Pediatr 2013; 167 (10): 967–974.

    Article  PubMed  Google Scholar 

  8. Nguyen TP, Amon E, Al-Hosni M, Gavard JA, Gross G, Myles TD . "Early" versus "late" 23-week infant outcomes. Am J Obstet Gynecol 2012; 207 (3): 226.

    Article  PubMed  Google Scholar 

  9. Lantos JD, Miles SH, Silverstein MD, Stocking CB . Survival after cardiopulmonary resuscitation in babies of very low birth weight. Is CPR futile therapy? N Engl J Med 1988; 318 (2): 91–95.

    CAS  Article  PubMed  Google Scholar 

  10. Dupont-Thibodeau A, Barrington KJ, Farlow B, Janvier A . End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided. Semin Perinatol 2014; 38 (1): 31–37.

    Article  PubMed  Google Scholar 

  11. Jefferies AL, Kirpalani HM . Counselling and management for anticipated extremely preterm birth. Paediatr Child Health 2012; 17 (8): 443–446.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Janvier A, Barrington K, Farlow B . Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol 2014; 38 (1): 38–46.

    Article  PubMed  Google Scholar 

  13. Payot A, Gendron S, Lefebvre F, Doucet H . Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision? Soc Sci Med 2007; 64 (7): 1487–1500.

    Article  PubMed  Google Scholar 

  14. Boss RD, Hutton N, Sulpar LJ, West AM, Donohue PK . Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 2008; 122 (3): 583–589.

    Article  PubMed  Google Scholar 

  15. Saigal S, Stoskopf B, Pinelli J, Streiner D, Hoult L, Paneth N et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood. Pediatrics 2006; 118 (3): 1140–1148.

    Article  PubMed  Google Scholar 

  16. Roberts G, Burnett AC, Lee KJ, Cheong J, Wood SJ, Anderson PJ et al. Quality of life at age 18 years after extremely preterm birth in the post-surfactant era. J Pediatr 2013; 163 (4): 1008–1013.

    Article  PubMed  Google Scholar 

  17. Marlow N, Wolke D, Bracewell MA, Samara M . Neurologic and developmental disability at six years of age after extremely preterm birth. N Engl J Med 2005; 352 (1): 9–19.

    CAS  Article  PubMed  Google Scholar 

  18. Larroque B, Ancel PY, Marret S, Marchand L, Andre M, Arnaud C et al. Neurodevelopmental disabilities and special care of 5-year-old children born before 33 weeks of gestation (the EPIPAGE study): a longitudinal cohort study. Lancet 2008; 371 (9615): 813–820.

    Article  PubMed  Google Scholar 

  19. Ancel PY, Goffinet F, EPIPAGE-2 Writing Group, Kuhn P, Langer B, Matis J et al. Survival and morbidity of preterm children born at 22 through 34 weeks' gestation in France in 2011: results of the EPIPAGE-2 cohort study. JAMA Pediatr 2015; 169 (3):230–238.

    Article  PubMed  Google Scholar 

  20. Roberts G, Anderson PJ, De LC, Doyle LW Victorian Infant Collaborative Study Group. Changes in neurodevelopmental outcome at age eight in geographic cohorts of children born at 22-27 weeks' gestational age during the 1990s. Arch Dis Child Fetal Neonatal Ed 2010; 95 (2): F90–F94.

    CAS  Article  PubMed  Google Scholar 

  21. Guillen U, DeMauro S, Ma L, Zupancic J, Wang E, Gafni A et al. Survival rates in extremely low birthweight infants depend on the denominator: avoiding potential for bias by specifying denominators. Am J Obstet Gynecol 2011; 205 (4): 329.e1–329.e7.

    Article  Google Scholar 

  22. AGREE Next Steps Consortium. The AGREE 2 instrument. Available at: http://www agreetrust org 2009 September (cited on 27 Mar 2015).

  23. Shiffman RN, Dixon J, Brandt C, Essaihi A, Hsiao A, Michel G et al. The GuideLine Implementability Appraisal (GLIA): development of an instrument to identify obstacles to guideline implementation. BMC Med Inform Decis Mak 2005; 5: 23.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Binepal N, Lemyre B, Dunn S, Daboval T, Aglipay M, Leduc S et al. Systematic review and quality appraisal of international guidelines on perinatal care of extremely premature infants. Curr Pediatr Rev 2015; 11 (2): 126–134.

    Article  PubMed  Google Scholar 

  25. Baumgardt M, Bucher HU, Mieth RA, Fauchere JC . Health-related quality of life of former very preterm infants in adulthood. Acta Paediatr 2012; 101 (2): e59–e63.

    Article  PubMed  Google Scholar 

  26. Can G, Bilgin L, Tatli B, Saydam R, Coban A, Ince Z . Morbidity in early adulthood among low-risk very low birth weight children in Turkey: a preliminary study. Turk J Pediatr 2012; 54 (5): 458–464.

    PubMed  Google Scholar 

  27. Darlow BA, Horwood LJ, Pere-Bracken HM, Woodward LJ . Psychosocial outcomes of young adults born very low birth weight. Pediatrics 2013; 132 (6): e1521–e1528.

    Article  PubMed  Google Scholar 

  28. Gaddlin PO, Finnstrom O, Sydsjo G, Leijon I . Most very low birth weight subjects do well as adults. Acta Paediatr 2009; 98 (9): 1513–1520.

    Article  PubMed  Google Scholar 

  29. Methusalemsdottir HF, Egilson ST, Guethmundsdottir R, Valdimarsdottir UA, Georgsdottir I . Quality of life of adolescents born with extremely low birth weight. Acta Paediatr 2013; 102 (6): 597–601.

    Article  PubMed  Google Scholar 

  30. Saigal S, Burrows E, Stoskopf BL, Rosenbaum PL, Streiner D . Impact of extreme prematurity on families of adolescent children. J Pediatr 2000; 137 (5): 701–706.

    CAS  Article  PubMed  Google Scholar 

  31. Eiser C, Eiser JR, Mayhew AG, Gibson AT . Parenting the premature infant: balancing vulnerability and quality of life. J Child Psychol Psychiatry 2005; 46 (11): 1169–1177.

    CAS  Article  PubMed  Google Scholar 

  32. Gray PH, Edwards DM, O'Callaghan MJ, Cuskelly M, Gibbons K . Parenting stress in mothers of very preterm infants—influence of development, temperament and maternal depression. Early Hum Dev 2013; 89 (9): 625–629.

    Article  PubMed  Google Scholar 

  33. Indredavik MS, Vik T, Heyerdahl S, Romundstad P, Brubakk AM . Low-birthweight adolescents: quality of life and parent-child relations. Acta Paediatr 2005; 94 (9): 1295–1302.

    Article  PubMed  Google Scholar 

  34. Lee CF, Hwang FM, Chen CJ, Chien LY . The interrelationships among parenting stress and quality of life of the caregiver and preschool child with very low birth weight. Fam Community Health 2009; 32 (3): 228–237.

    Article  PubMed  Google Scholar 

  35. Moore M, Gerry TH, Klein N, Minich N, Hack M . Longitudinal changes in family outcomes of very low birth weight. J Pediatr Psychol 2006; 31 (10): 1024–1035.

    Article  PubMed  Google Scholar 

  36. Saigal S, Pinelli J, Streiner DL, Boyle M, Stoskopf B . Impact of extreme prematurity on family functioning and maternal health 20 years later. Pediatrics 2010; 126 (1): e81–e88.

    Article  PubMed  Google Scholar 

  37. Singer LT, Fulton S, Kirchner HL, Eisengart S, Lewis B, Short E et al. Parenting very low birth weight children at school age: maternal stress and coping. J Pediatr 2007; 151 (5): 463–469.

    Article  PubMed  Google Scholar 

  38. Singer LT, Fulton S, Kirchner HL, Eisengart S, Lewis B, Short E et al. Longitudinal predictors of maternal stress and coping after very low-birth-weight birth. Arch Pediatr Adolesc Med 2010; 164 (6): 518–524.

    Article  PubMed  Google Scholar 

  39. Taylor HG, Klein N, Minich NM, Hack M . Long-term family outcomes for children with very low birth weights. Arch Pediatr Adolesc Med 2001; 155 (2): 155–161.

    CAS  Article  PubMed  Google Scholar 

  40. Treyvaud K, Doyle LW, Lee KJ, Roberts G, Cheong JL, Inder TE et al. Family functioning, burden and parenting stress 2 years after very preterm birth. Early Hum Dev 2011; 87 (6): 427–431.

    Article  PubMed  Google Scholar 

  41. Treyvaud K, Lee KJ, Doyle LW, Anderson PJ . Very preterm birth influences parental mental health and family outcomes seven years after birth. J Pediatr 2014; 164 (3): 515–521.

    Article  PubMed  Google Scholar 

  42. Witt WP, Litzelman K, Spear HA, Wisk LE, Levin N, McManus BM et al. Health-related quality of life of mothers of very low birth weight children at the age of five: results from the Newborn Lung Project Statewide Cohort Study. Qual Life Res 2012; 21 (9): 1565–1576.

    Article  PubMed  Google Scholar 

  43. Bakhshi T, Landon MB, Lai Y, Spong CY, Rouse DJ, Leveno KJ et al. Maternal and neonatal outcomes of repeat cesarean delivery in women with a prior classical versus low transverse uterine incision. Am J Perinatol 2010; 27 (10): 791–796.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Bethune M, Permezel M . The relationship between gestational age and the incidence of classical caesarean section. Aust N Z J Obstet Gynaecol 1997; 37 (2): 153–155.

    CAS  Article  PubMed  Google Scholar 

  45. Lannon SM, Guthrie KA, Reed SD, Gammill HS . Mode of delivery at periviable gestational ages: impact on subsequent reproductive outcomes. J Perinat Med 2013; 41 (6): 691–697.

    Article  PubMed  Google Scholar 

  46. Patterson LS, O'Connell CM, Baskett TF . Maternal and perinatal morbidity associated with classic and inverted T cesarean incisions. Obstet Gynecol 2002; 100 (4): 633–637.

    PubMed  Google Scholar 

  47. Gyamfi-Bannerman C, Gilbert S, Landon MB, Spong CY, Rouse DJ, Varner MW et al. Risk of uterine rupture and placenta accreta with prior uterine surgery outside of the lower segment. Obstet Gynecol 2012; 120 (6): 1332–1337.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Chauhan SP, Magann EF, Wiggs CD, Barrilleaux PS, Martin JN Jr . Pregnancy after classic cesarean delivery. Obstet Gynecol 2002; 100 (5 Pt 1): 946–950.

    PubMed  Google Scholar 

  49. Reddy UM, Rice MM, Grobman WA, Bailit JL, Wapner RJ, Varner MW et al. Serious maternal complications after early preterm delivery (24-33 weeks' gestation). Am J Obstet Gynecol 2015; 213 (4): 538–539.

    Article  PubMed  PubMed Central  Google Scholar 

  50. Raju TN, Mercer BM, Burchfield DJ, Joseph GF Jr . Periviable birth: executive summary of a joint workshop by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Society for Maternal-Fetal Medicine, American Academy of Pediatrics, and American College of Obstetricians and Gynecologists. Obstet Gynecol 2014; 123 (5): 1083–1096.

    Article  PubMed  Google Scholar 

  51. Perinatal Management of Pregnant Women at the Threshold of Viability (The Obstetric Perspective). 41. 2014. Royal College of Obstetricians and Gynaecologists. Ref Type: Generic.

  52. American College of Obstetricians and Gynecologists; Society for Maternal-Fetal Medicine. Obstetric care consensus no. 3 summary: periviable birth. Obstet Gynecol 2015; 126 (5): 1123–1125.

    Article  Google Scholar 

  53. Daboval T, Shidler S . Ethical framework for shared decision making in the neonatal intensive care unit: communicative ethics. Paediatr Child Health 2014; 19 (6): 302–304.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P et al. Shared decision making: a model for clinical practice. J Gen Intern Med 2012; 27 (10): 1361–1367.

    Article  PubMed  PubMed Central  Google Scholar 

  55. Charles C, Gafni A, Whelan T . Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997; 44 (5): 681–692.

    CAS  Article  PubMed  Google Scholar 

  56. Daboval T, Moore GP, Ferretti E . How we teach ethics and communication during a Canadian neonatal perinatal medicine residency: an interactive experience. Med Teach 2013; 35 (3): 194–200.

    Article  PubMed  Google Scholar 

  57. Muirhead P . When parents and physicians disagree: what is the ethical pathway? Paediatr Child Health 2004; 9 (2): 85–86.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Mahgoub L, van MM, Byrne P, Tyebkhan JM . Policy change for infants born at the "cusp of viability": a Canadian NICU experience. Pediatrics 2014; 134 (5): e1405–e1410.

    Article  PubMed  Google Scholar 

  59. Staub K, Baardsnes J, Hebert N, Hebert M, Newell S, Pearce R . Our child is not just a gestational age. A first-hand account of what parents want and need to know before premature birth. Acta Paediatr 2014; 103 (10): 1035–1038.

    Article  PubMed  Google Scholar 

  60. Janvier A, Barrington KJ, Aziz K, Bancalari E, Batton D, Bellieni C et al. CPS position statement for prenatal counselling before a premature birth: simple rules for complicated decisions. Paediatr Child Health 2014; 19 (1): 22–24.

    PubMed  PubMed Central  Google Scholar 

  61. Daboval T, Shilder T . Participation des parents au processus de décision lors de la consultation anténatale pour l'enfant à risque de naître à la limite de la viabilité. [Memoire] 2014. Available at:http://depositum.uqat.ca/574/1/Daboval%2C_Thierry.pdf UQAT. Ref Type: Generic.

  62. Kaempf JW, Tomlinson MW, Campbell B, Ferguson L, Stewart VT . Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes. Pediatrics 2009; 123 (6): 1509–1515.

    Article  PubMed  Google Scholar 

  63. Lui K, Bajuk B, Foster K, Gaston A, Kent A, Sinn J et al. Perinatal care at the borderlines of viability: a consensus statement based on a NSW and ACT consensus workshop. Med J Aust 2006; 185 (9): 495–500.

    PubMed  Google Scholar 

  64. Cummings J . Committee on fetus and newborn. Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation. Pediatrics 2015; 136 (3): 588–595.

    Article  PubMed  Google Scholar 

  65. Guillen U, Weiss EM, Munson D, Maton P, Jefferies A, Norman M et al. Guidelines for the management of extremely premature deliveries: a systematic review. Pediatrics 2015; 136 (2): 343–350.

    Article  PubMed  Google Scholar 

  66. Caeymaex L, Jousselme C, Vasilescu C, Danan C, Falissard B, Bourrat MM et al. Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Arch Dis Child Fetal Neonatal Ed 2013; 98 (1): F26–F31.

    Article  PubMed  Google Scholar 

  67. Scheibler F, Janssen C, Pfaff H . Shared decision making: an overview of international research literature. Soz Praventivmed 2003; 48 (1): 11–23.

    Article  PubMed  Google Scholar 

  68. Suh WS, Lee CK . Impact of shared-decision making on patient satisfaction. J Prev Med Public Health 2010; 43 (1): 26–34.

    Article  PubMed  Google Scholar 

  69. Swanson KA, Bastani R, Rubenstein LV, Meredith LS, Ford DE . Effect of mental health care and shared decision making on patient satisfaction in a community sample of patients with depression. Med Care Res Rev 2007; 64 (4): 416–430.

    Article  PubMed  Google Scholar 

  70. Stacey D, Legare F, Col NF, Bennett CL, Barry MJ, Eden KB et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014; 1: CD001431.

    Google Scholar 

  71. Batton D . Resuscitation of extremely low gestational age infants: an advisory committee's dilemmas. Acta Paediatr 2010; 99 (6): 810–811.

    Article  PubMed  Google Scholar 

  72. Daboval T, Ferretti E, Rohde K, Muirhead P, Moore G . Neonatal Ethics Teaching Program - Scenario-Oriented Learning in Ethics: Antenatal Consultation at the Limit of Viability. MedEdPORTAL Publications; 2015. Available from: https://www.mededportal.org/publication/10043.

Download references

Acknowledgements

We would like to acknowledge the contribution of the SDM for EPI working group members (Sonia Baruzzo, Karen Dryden-Kiser, Clare Giroux, Sarah Henderson, Nancy Paquin, Claudia Smith, Sarah Smith, Julie Wenge, Daniel Wilton and Amanda Wilton).

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to B Lemyre.

Ethics declarations

Competing interests

The authors declare no conflict of interest.

Additional information

Supplementary Information accompanies the paper on the Journal of Perinatology website

Supplementary information

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Lemyre, B., Daboval, T., Dunn, S. et al. Shared decision making for infants born at the threshold of viability: a prognosis-based guideline. J Perinatol 36, 503–509 (2016). https://doi.org/10.1038/jp.2016.81

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/jp.2016.81

Further reading

Search

Quick links