Download PDF
Am J Perinatol 2015; 32(08): 713-724
DOI: 10.1055/s-0034-1395475
Original Article
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents

DonnaMaria E. Cortezzo
1   Department of Anesthesia, Division of Pain and Palliative Medicine, Cincinnati Children's Hospital Medical Center, Ohio
,
Marilyn R. Sanders
2   Division of Neonatology, Department of Pediatrics, University of Connecticut School of Medicine, Connecticut Children's Medical Center, Connecticut
,
Elizabeth A. Brownell
3   Division of Neonatology, Department of Research and Pediatrics, University of Connecticut School of Medicine, Connecticut Children's Medical Center, Connecticut
,
Kerry Moss
4   Division of Hematology-Oncology, Department of Pediatrics, University of Connecticut School of Medicine, Connecticut Children's Medical Center, Connecticut
› Author Affiliations
Further Information

Publication History

08 March 2014

08 September 2014

Publication Date:
17 December 2014 (online)

    Permissions and Reprints

Abstract

Objective The aim of the study is to determine the perceptions of end-of-life care practices and experience with infants who have died in the NICU among neonatologists, advanced practitioners, nurses, and parents, and also to determine perceived areas for improvement and the perceived value of a palliative care team.

Study Design This descriptive, exploratory cross-sectional study using surveys consisting of 7-point Likert scales and free response comments was sent to all neonatologists (n = 14), advanced practitioners (n = 40), and nurses (n = 184) at Connecticut Children's Medical Center's neonatal intensive care units (NICUs) in April 2013 and to all parents whose infants died in these NICUs from July 1, 2011, to December 31, 2012 (n = 28).

Results The response rates were 64.3% for physicians; 50.0% for practitioners; 40.8% for nurses; and 30.4% for parents. Most providers reported they feel comfortable delivering end-of-life care. Bereavement support, debriefing/closure conferences, and education did not occur routinely. Families stressed the importance of memory making and bereavement/follow-up. Consistent themes of free responses include modalities for improving end-of-life care, inconsistency of care delivery among providers, and the importance of memory making and follow-up.

Conclusion End-of-life experiences in the NICU were perceived as variable and end-of-life practices were, at times, perceived as inconsistent among providers. There are areas for improvement, and participants reported that a formalized palliative care team could help. Families desire memory making, follow-up, and bereavement support.

Keywords

end-of-life experiences - end-of-life care - neonate
 

  • References

  • 1 MacDorman MF, Kirmeyer S. Fetal and perinatal mortality, United States, 2005. Natl Vital Stat Rep 2009; 57 (8) 1-19
    PubMedGoogle Scholar
  • 2 Heron M, Hoyert DL, Murphy SL, Xu J, Kochanek KD, Tejada-Vera B. Deaths: final data for 2006. Natl Vital Stat Rep 2009; 57 (14) 1-134
    PubMedGoogle Scholar
  • 3 Hoyert DL, Arias E, Smith BL, Murphy SL, Kochanek KD. Deaths: final data for 1999. Natl Vital Stat Rep 2001; 49 (8) 1-113
    PubMedGoogle Scholar
  • 4 Hoyert DL, Heron MP, Murphy SL, Kung HC. Deaths: final data for 2003. Natl Vital Stat Rep 2006; 54 (13) 1-120
    PubMedGoogle Scholar
  • 5 Carter BS, Hubble C, Weise KL. Palliative medicine in neonatal and pediatric intensive care. Child Adolesc Psychiatr Clin N Am 2006; 15 (3) 759-777
    CrossrefPubMedGoogle Scholar
  • 6 Carter B, Levetown M. Palliative Care for the Infants, Children, and Adolescents: A Practical Handbook. Baltimore, MD: John's Hopkins University Press; 2011
    Google Scholar
  • 7 Kain VJ. Palliative care delivery in the NICU: what barriers do neonatal nurses face?. Neonatal Netw 2006; 25 (6) 387-392
    CrossrefPubMedGoogle Scholar
  • 8 Cortezzo DE, Sanders MR, Brownell E, Moss K. Neonatologists' perspectives of palliative and end-of-life care in neonatal intensive care units. J Perinatol 2013; 33 (9) 731-735
    CrossrefPubMedGoogle Scholar
  • 9 Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatr 2012; 12: 25
    CrossrefPubMedGoogle Scholar
  • 10 Armentrout D, Cates LA. Informing parents about the actual or impending death of their infant in a newborn intensive care unit. J Perinat Neonatal Nurs 2011; 25 (3) 261-267
    Google Scholar
  • 11 Henley A, Schott J. The death of a baby before, during or shortly after birth: good practice from the parents' perspective. Semin Fetal Neonatal Med 2008; 13 (5) 325-328
    CrossrefPubMedGoogle Scholar
  • 12 Gold KJ. Navigating care after a baby dies: a systematic review of parent experiences with health providers. J Perinatol 2007; 27 (4) 230-237
    CrossrefPubMedGoogle Scholar
  • 13 Gale G, Brooks A. Implementing a palliative care program in a newborn intensive care unit. Adv Neonatal Care 2006; 6 (1) 37-53
    CrossrefPubMedGoogle Scholar
  • 14 Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonatal Nurs 2006; 20 (1) 113-116
    CrossrefPubMedGoogle Scholar
  • 15 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
    CrossrefPubMedGoogle Scholar
  • 16 Eden LM, Callister LC. Parent involvement in end-of-life care and decision making in the newborn intensive care unit: an integrative review. J Perinat Educ 2010; 19 (1) 29-39
    CrossrefPubMedGoogle Scholar
  • 17 Ward FR. Parents and professionals in the NICU: communication within the context of ethical decision making—an integrative review. Neonatal Netw 2005; 24 (3) 25-33
    PubMedGoogle Scholar
  • 18 Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents' perspective. J Perinatol 2007; 27 (8) 510-516
    CrossrefPubMedGoogle Scholar
  • 19 Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 2002; 156 (1) 14-19
    CrossrefPubMedGoogle Scholar
  • 20 Heller KS, Solomon MZ. Initiative for Pediatric Palliative Care (IPPC) Investigator Team. Continuity of care and caring: what matters to parents of children with life-threatening conditions. J Pediatr Nurs 2005; 20 (5) 335-346
    CrossrefPubMedGoogle Scholar
  • 21 Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations. Pediatrics 2006; 117 (3) 649-657
    CrossrefPubMedGoogle Scholar
  • 22 Seecharan GA, Andresen EM, Norris K, Toce SS. Parents' assessment of quality of care and grief following a child's death. Arch Pediatr Adolesc Med 2004; 158 (6) 515-520
    CrossrefPubMedGoogle Scholar
  • 23 Davies B, Connaughty S. Pediatric end-of-life care: lessons learned from parents. J Nurs Adm 2002; 32 (1) 5-6
    CrossrefPubMedGoogle Scholar
  • 24 Midson R, Carter B. Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents' experiences. J Child Health Care 2010; 14 (1) 52-66
    CrossrefPubMedGoogle Scholar
  • 25 Williams C, Cairnie J, Fines V , et al; With Care team. Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit. Pediatrics 2009; 123 (1) e87-e95
    CrossrefPubMedGoogle Scholar
  • 26 Widger K, Picot C. Parents' perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs 2008; 34 (1) 53-58
    PubMedGoogle Scholar
  • 27 Rini A, Loriz L. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs 2007; 22 (4) 272-282
    CrossrefPubMedGoogle Scholar
  • 28 Field M, Behrman R. When Children Die Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: National Academies Press; 2003
    Google Scholar
  • 29 Lundqvist A, Nilstun T, Dykes AK. Both empowered and powerless: mothers' experiences of professional care when their newborn dies. Birth 2002; 29 (3) 192-199
    CrossrefPubMedGoogle Scholar
  • 30 Kavanaugh K, Moro TT, Savage TA. How nurses assist parents regarding life support decisions for extremely premature infants. J Obstet Gynecol Neonatal Nurs 2010; 39 (2) 147-158
    CrossrefPubMedGoogle Scholar
  • 31 McHaffie HE, Lyon AJ, Hume R. Deciding on treatment limitation for neonates: the parents' perspective. Eur J Pediatr 2001; 160 (6) 339-344
    CrossrefPubMedGoogle Scholar
  • 32 Kowalski WJ, Leef KH, Mackley A, Spear ML, Paul DA. Communicating with parents of premature infants: who is the informant?. J Perinatol 2006; 26 (1) 44-48
    CrossrefPubMedGoogle Scholar
  • 33 Carter BS, Guthrie SO. Utility of morbidity and mortality conference in end-of-life education in the neonatal intensive care unit. J Palliat Med 2007; 10 (2) 375-380
    CrossrefPubMedGoogle Scholar
  • 34 Leuthner SR. Fetal palliative care. Clin Perinatol 2004; 31 (3) 649-665
    CrossrefPubMedGoogle Scholar
  • 35 Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol 2002; 22 (3) 184-195
    Google Scholar
  • 36 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
    CrossrefPubMedGoogle Scholar
  • 37 Moro T, Kavanaugh K, Okuno-Jones S, Vankleef JA. Neonatal end-of-life care: a review of the research literature. J Perinat Neonatal Nurs 2006; 20 (3) 262-273
    CrossrefPubMedGoogle Scholar
  • 38 Engler AJ, Cusson RM, Brockett RT , et al. Neonatal staff and advanced practice nurses' perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants. Am J Crit Care 2004; 13 (6) 489-498
    PubMedGoogle Scholar
  • 39 Cavaliere TA, Daly B, Dowling D, Montgomery K. Moral distress in neonatal intensive care unit RNs. Adv Neonatal Care 2010; 10 (3) 145-156
    CrossrefPubMedGoogle Scholar
  • 40 Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 2004; 114 (5) 1248-1252
    CrossrefPubMedGoogle Scholar