Abstract
Objective:
Determine palliative and end-of-life care practices, barriers and beliefs among US neonatologists, and relationships between practice characteristics and palliative care delivery.
Study design:
A descriptive cross-sectional survey with ordinal measurements. The survey was sent to 1885 neonatologists.
Results:
There were 725 responses (38.5%) with 653 (34.6%) completing the survey. Of those, 58.0% (n=379) have palliative care teams and 72.0% (n=470) have staff support groups or bereavement services. Palliative care education was deemed important (n=623) and needed. Barriers include emotional difficulties, staff disagreements and difficulty forming palliative care teams. Palliative care teams or staff bereavement groups were significantly predictive of willingness to initiate palliative care and more positive views or experiences.
Conclusion:
Neonatologists believe that palliative care is important. Education and palliative care teams help provide quality care. Exploration of differing views of palliative care among team members is needed.
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References
MacDorman MF, Kirmeyer S . Fetal and perinatal mortality, United States, 2005. Natl Vital Stat Rep 2009; 57 (8): 1–19.
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.
Peters KD, Kochanek KD, Murphy SL . Deaths: final data for 1996. Natl Vital Stat Rep 1998; 47 (9): 1–100.
Hoyert DL, Arias E, Smith BL, Murphy SL, Kochanek KD . Deaths: final data for 1999. Natl Vital Stat Rep 2001; 49 (8): 1–113.
Hoyert DL, Heron MP, Murphy SL, Kung HC . Deaths: final data for 2003. Natl Vital Stat Rep 2006; 54 (13): 1–120.
WHO. Definition of Palliative Carehttp://www.who.int/cancer/palliative/definition/en/.
Lantos JD, Tyson JE, Allen A, Frader J, Hack M, Korones S et al. Withholding and withdrawing life sustaining treatment in neonatal intensive care: issues for the 1990s. Arch Dis Child Fetal Neonatal Ed 1994; 71 (3): F218–F223.
McHaffie HE, Cuttini M, Brölz-Voit G, Randag L, Mousty R, Duguet AM et al. Withholding/withdrawing treatment from neonates: legislation and official guidelines across Europe. J Med Ethics 1999; 25 (6): 440–446.
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.
Carter B, Levetown M . Palliative Care for the Infants, Children, and Adolescents: A Practical Handbook. John's Hopkins University Press: Baltimore, MD, USA, 247–272 2004.
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.
Akpinar A, Senses MO, Aydin ErR . Attitudes to end-of-life decisions in paediatric intensive care. Nurs Ethics 2009; 16 (1): 83–92.
Bilgen H, Topuzoğlu A, Kuşçu K, Altuncu E, Ozek E . End-of-life decisions in the newborn period: attitudes and practices of doctors and nurses. Turk J Pediatr 2009; 51 (3): 248–256.
Burns JP, Mitchell C, Griffith JL, Truog RD . End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses. Crit Care Med 2001; 29 (3): 658–664.
Cremer R . End of life in paediatric intensive care units: the intensivist's point of view. Arch Pediatr 2010; 17 (6): 970–971.
Cuttini M, Nadai M, Kaminski M, Hansen G, de Leeuw R, Lenoir S et al. End-of-life decisions in neonatal intensive care: physicians' self-reported practices in seven European countries. EURONIC Study Group. Lancet 2000; 355 (9221): 2112–2118.
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.
Hilden JM, Emanuel EJ, Fairclough DL, Link MP, Foley KM, Clarridge BC et al. Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 2001; 19 (1): 205–212.
Jones PM, Carter BS . Pediatric palliative care: feedback from the pediatric intensivist community. Am J Hosp Palliat Care 2010; 27 (7): 450–455.
Kain VJ . Palliative care delivery in the NICU: what barriers do neonatal nurses face? Neonatal Netw 2006; 25 (6): 387–392.
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.
Knapp C, Thompson L, Madden V, Shenkman E . Paediatricians' perceptions on referrals to paediatric palliative care. Palliat Med 2009; 23 (5): 418–424.
Knapp C, Thompson L . Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California. Palliat Med 2011; 26 (3): 268–274.
Levetown M, Hayslip B, Peel J . The development of the physicians' end-of-life care attitude scale. Omega (Westport) 2000-1999; 40 (2): 323–333.
Linton JM, Feudtner C . What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms. Pediatrics 2008; 122 (3): 574–582.
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 2000; 284 (19): 2451–2459.
Rendón-Macías ME, Olvera-González H, Villasís-Keever MA . [The pediatric patient at the end-of-life. A challenge for its identification and treatment. A survey in pediatricians and medical residents]. Rev Invest Clin 2011; 63 (2): 135–147.
Sheetz MJ, Bowman MA . Pediatric palliative care: an assessment of physicians' confidence in skills, desire for training, and willingness to refer for end-of-life care. Am J Hosp Palliat Care 2008; 25 (2): 100–105.
St-Laurent-Gagnon T, Carnevale FA, Duval M . Pediatric palliative care: a qualitative study of physicians' perspectives in a tertiary care university hospital. J Palliat Care 2008; 24 (1): 26–30.
Tubbs-Cooley HL, Santucci G, Kang TI, Feinstein JA, Hexem KR, Feudtner C . Pediatric nurses' individual and group assessments of palliative, end-of-life, and bereavement care. J Palliat Med 2011; 14 (5): 631–637.
Wright V, Prasun MA, Hilgenberg C . Why is end-of-life care delivery sporadic? A quantitative look at the barriers to and facilitators of providing end-of-life care in the neonatal intensive care unit. Adv Neonatal Care 2011; 11 (1): 29–36.
Bhatt Dea . Newborn Intensive Care Units (NICUs) and Neonatologists of the USA and Canada. Neonatology Today 2011.
Romesberg TL . Building a case for neonatal palliative care. Neonatal Netw 2007; 26 (2): 111–115.
Carter BS . Providing palliative care for newborns. Pediatr Ann 2004; 33 (11): 770–777.
Boss RD, Hutton N, Donohue PK, Arnold RM . Neonatologist training to guide family decision making for critically ill infants. Arch Pediatr Adolesc Med 2009; 163 (9): 783–788.
Althouse LA, Stockman JA Pediatrics ABo. Pediatric workforce: a look at neonatal-perinatal medicine data from the American Board of Pediatrics. J Pediatr 2006; 148 (6): 727–729.
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Cortezzo, D., Sanders, M., Brownell, E. et al. Neonatologists’ perspectives of palliative and end-of-life care in neonatal intensive care units. J Perinatol 33, 731–735 (2013). https://doi.org/10.1038/jp.2013.38
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DOI: https://doi.org/10.1038/jp.2013.38
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