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.

  • Original Article
  • Published:

Impact of a palliative care program on end-of-life care in a neonatal intensive care unit

Subjects

Abstract

Objective:

Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.

Study design:

Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan and staff education.

Result:

Eighty-two infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar (88% vs 81%; P =0.17), whereas benzodiazepines use increased in Era 2 (26% vs 43%; P=0.03). Withdrawal of life support (73% vs 63%; P=0.17) and do-not-resuscitate orders (46% vs 53%; P=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared with infants without activated orders (n=47).

Conclusion:

End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication.

This is a preview of subscription content, access via your institution

Access options

Rent or buy this article

Prices vary by article type

from$1.95

to$39.95

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

References

  1. Field MJ, Behrman RE (eds). When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. National Academies Press: Washington, DC, USA, 2003.

    Google Scholar 

  2. 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(6): 1107–1111.

    Article  PubMed  Google Scholar 

  3. 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(6): F527–F530.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  4. Verhagen AA, Dorscheidt JH, Engels B, Hubben JH, Sauer PJ . End-of-life decisions in Dutch neonatal intensive care units. Arch Pediatr Adolesc Med 2009; 163(10): 895–901.

    Article  PubMed  Google Scholar 

  5. Wall SN, Partridge JC . Death in the intensive care nursery: physician practice of withdrawing and withholding life support. Pediatrics 1997; 99(1)):64–70.

    Article  CAS  PubMed  Google Scholar 

  6. Cook LA, Watchko JF . Decision making for the critically ill neonate near the end of life. J Perinatol 1996; 16(2 Pt 1): 133–136.

    CAS  PubMed  Google Scholar 

  7. Barton L, Hodgman JE . The contribution of withholding or withdrawing care to newborn mortality. Pediatrics 2005; 116(6): 1487–1491.

    Article  PubMed  Google Scholar 

  8. Wilkinson DJ, Fitzsimons JJ, Dargaville PA, Campbell NT, 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(4): F268–F271.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  9. Hagen CM, Hansen TW . Deaths in a neonatal intensive care unit: a 10-year perspective. Pediatr Crit Care Med 2004; 5(5): 463–468.

    Article  PubMed  Google Scholar 

  10. Weiner J, Sharma J, Lantos J, Kilbride H . How infants die in the neonatal intensive care unit: trends from 1999 through 2008. Arch Pediatr Adolesc Med 2011; 165(7): 630–634.

    Article  PubMed  Google Scholar 

  11. Section on Hospice and Palliative Medicine and Committee on Hospital Care. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics 2013; 132(5): 966–972.

    Article  Google Scholar 

  12. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care Palliative care for children. Pediatrics 2000; 106(2 Pt 1): 351–357.

    Article  Google Scholar 

  13. Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S et al. Pediatric palliative care programs in children's hospitals: a cross-sectional national survey. Pediatrics 2013; 132(6): 1063–1070.

    Article  PubMed  Google Scholar 

  14. Gans D, Kominski GF, Roby DH, Diamant AL, Chen X, Lin W et al. Better outcomes, lower costs: palliative care program reduces stress, costs of care for children with life-threatening conditions. Policy Brief UCLA Cent Health Policy Res 2012; ((PB2012-3): 1–8.

  15. Brandon D, Docherty SL, Thorpe J . Infant and child deaths in acute care settings: implications for palliative care. J Palliat Med 2007; 10(4): 910–918.

    Article  PubMed  Google Scholar 

  16. Leuthner SR, Pierucci R . Experience with neonatal palliative care consultation at the Medical College of Wisconsin-Children's Hospital of Wisconsin. J Palliat Med 2001; 4(1): 39–47.

    Article  CAS  PubMed  Google Scholar 

  17. Catlin A, Carter B . Creation of a neonatal end-of-life palliative care protocol. J Perinatol 2002; 22(3): 184–195.

    Article  PubMed  Google Scholar 

  18. Carter BS, Bhatia J . Comfort/palliative care guidelines for neonatal practice: development and implementation in an academic medical center. J Perinatol 2001; 21(5): 279–283.

    Article  CAS  PubMed  Google Scholar 

  19. Gale G, Brooks A . Implementing a palliative care program in a newborn intensive care unit. Adv Neonatal Care 2006; 6(1): 37–53.

    Article  PubMed  Google Scholar 

  20. Pierucci RL, Kirby RS, Leuthner SR . End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service. Pediatrics 2001; 108(3): 653–660.

    Article  CAS  PubMed  Google Scholar 

  21. Singh J, Lantos J, Meadow W . End-of-life after birth: death and dying in a neonatal intensive care unit. Pediatrics 2004; 114(6): 1620–1626.

    Article  PubMed  Google Scholar 

  22. Hentschel R, Lindner K, Krueger M, Reiter-Theil S . Restriction of ongoing intensive care in neonates: a prospective study. Pediatrics 2006; 118(2): 563–569.

    Article  PubMed  Google Scholar 

  23. Bell EF . Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics 2007; 119(2): 401–403.

    Article  PubMed  Google Scholar 

  24. Davies B, Sehring SA, Partridge JC, Cooper BA, Hughes A, Philp JC et al. Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics 2008; 121 ((2)): 282–288.

    Article  PubMed  Google Scholar 

  25. Kain V, Gardner G, Yates P . Neonatal palliative care attitude scale: development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing. Pediatrics 2009; 123(2): e207–e213.

    Article  PubMed  Google Scholar 

  26. Partridge JC, Wall SN . Analgesia for dying infants whose life support is withdrawn or withheld. Pediatrics 1997; 99(1): 76–79.

    Article  CAS  PubMed  Google Scholar 

  27. Janvier A, Meadow W, Leuthner SR, Andrews B, Lagatta J, Bos A et al. Whom are we comforting? An analysis of comfort medications delivered to dying neonates. J Pediatr 2011; 159(2): 206–210.

    Article  PubMed  Google Scholar 

  28. Henderson M, MacGregor E, Sykes N, Hotopf M . The use of benzodiazepines in palliative care. Palliat Med 2006; 20(4): 407–412.

    Article  CAS  PubMed  Google Scholar 

  29. Chan JD, Treece PD, Engelberg RA, Crowley L, Rubenfeld GD, Steinberg KP et al. Narcotic and benzodiazepine use after withdrawal of life support: association with time to death? Chest 2004; 126(1): 286–293.

    Article  CAS  PubMed  Google Scholar 

Download references

Acknowledgements

We thank Kimberley A Fisher, PhD, and Carolyn Jones, MSN, NNP for their expert technical contributions (financial support provided by the Jean and George W Brumley, Jr Neonatal Perinatal Research Institute). Dr Smith receives salary support for research from the NIH and the US Department of Health and Human Services (government contract HHSN267200700051C, HHSN275201000003I, and UL1TR001117). Dr. Cotten received funding from NICHD: 5U10HD040492-10, from NHLBI: 1R01HL10570201A1 and from NIDDK: NIH-NIDDK203-2345. Dr. Brandon received funding from NIH-NINRR01NR010548.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to M Bidegain.

Ethics declarations

Competing interests

The authors declare no conflict of interest.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Younge, N., Smith, P., Goldberg, R. et al. Impact of a palliative care program on end-of-life care in a neonatal intensive care unit. J Perinatol 35, 218–222 (2015). https://doi.org/10.1038/jp.2014.193

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/jp.2014.193

This article is cited by

Search

Quick links