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Consultation of parents in actual end-of-life decision-making in neonates and infants

(2006) EUROPEAN JOURNAL OF PEDIATRICS. 165(12). p.859-866
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Abstract
The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p < 0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.
Keywords
PHYSICIANS, CHILDREN, CONFEDERATION, NEONATOLOGY, GUIDELINES, infant care, infant death, infant mortality, medical ethics, medical futility, HEALTH-CARE PROFESSIONALS, end of life decision, WITHDRAWAL, EUROPEAN-SPECIALISTS, INTENSIVE-CARE, ETHICS WORKING GROUP

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Citation

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MLA
Provoost, Veerle, Filip Cools, Peter Deconinck, et al. “Consultation of Parents in Actual End-of-life Decision-making in Neonates and Infants.” EUROPEAN JOURNAL OF PEDIATRICS 165.12 (2006): 859–866. Print.
APA
Provoost, Veerle, Cools, F., Deconinck, P., Ramet, J., Deschepper, R., Bilsen, J., Mortier, F., et al. (2006). Consultation of parents in actual end-of-life decision-making in neonates and infants. EUROPEAN JOURNAL OF PEDIATRICS, 165(12), 859–866.
Chicago author-date
Provoost, Veerle, Filip Cools, Peter Deconinck, José Ramet, Reginald Deschepper, Johan Bilsen, Freddy Mortier, Yvan Vandenplas, and Luc Deliens. 2006. “Consultation of Parents in Actual End-of-life Decision-making in Neonates and Infants.” European Journal of Pediatrics 165 (12): 859–866.
Chicago author-date (all authors)
Provoost, Veerle, Filip Cools, Peter Deconinck, José Ramet, Reginald Deschepper, Johan Bilsen, Freddy Mortier, Yvan Vandenplas, and Luc Deliens. 2006. “Consultation of Parents in Actual End-of-life Decision-making in Neonates and Infants.” European Journal of Pediatrics 165 (12): 859–866.
Vancouver
1.
Provoost V, Cools F, Deconinck P, Ramet J, Deschepper R, Bilsen J, et al. Consultation of parents in actual end-of-life decision-making in neonates and infants. EUROPEAN JOURNAL OF PEDIATRICS. 2006;165(12):859–66.
IEEE
[1]
V. Provoost et al., “Consultation of parents in actual end-of-life decision-making in neonates and infants,” EUROPEAN JOURNAL OF PEDIATRICS, vol. 165, no. 12, pp. 859–866, 2006.
@article{2155204,
  abstract     = {The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p < 0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.},
  author       = {Provoost, Veerle and Cools, Filip and Deconinck, Peter and Ramet, José and Deschepper, Reginald and Bilsen, Johan and Mortier, Freddy and Vandenplas, Yvan and Deliens, Luc},
  issn         = {0340-6199},
  journal      = {EUROPEAN JOURNAL OF PEDIATRICS},
  keywords     = {PHYSICIANS,CHILDREN,CONFEDERATION,NEONATOLOGY,GUIDELINES,infant care,infant death,infant mortality,medical ethics,medical futility,HEALTH-CARE PROFESSIONALS,end of life decision,WITHDRAWAL,EUROPEAN-SPECIALISTS,INTENSIVE-CARE,ETHICS WORKING GROUP},
  language     = {eng},
  number       = {12},
  pages        = {859--866},
  title        = {Consultation of parents in actual end-of-life decision-making in neonates and infants},
  url          = {http://dx.doi.org/10.1007/s00431-006-0190-4},
  volume       = {165},
  year         = {2006},
}

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