This Article
Right arrow Full Text
Right arrow Full Text (PDF)
Right arrow P3Rs: Submit a response
Right arrow Alert me when this article is cited
Right arrow Alert me when P3Rs are posted
Right arrow Alert me if a correction is posted
Right arrow Citation Map
Services
Right arrow E-mail this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Add to My File Cabinet
Right arrow Download to citation manager
Right arrow reprints & permissions
Citing Articles
Right arrow Citing Articles via HighWire
Right arrow Citing Articles via CrossRef
Right arrow Citing Articles via Google Scholar
Google Scholar
Right arrow Articles by van der Heide, A.
Right arrow Articles by Holl, R. A.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by van der Heide, A.
Right arrow Articles by Holl, R. A.
Related Collections
Right arrow Premature & Newborn

PEDIATRICS Vol. 101 No. 3 March 1998, pp. 413-418

The Role of Parents in End-of-Life Decisions in Neonatology: Physicians' Views and Practices

Received Jun 26, 1997; accepted Sep 2, 1997.

Agnes van der Heide*, Paul J. van der Maas*, Gerrit van der WalDagger , Louis A. A. Kollée§, Richard de Leeuw§, and Robert A. Holl§

From the * Department of Public Health, Erasmus University, Rotterdam, The Netherlands; the Dagger  Institute for Research in Extramural Medicine, Vrije Universiteit, Amsterdam, The Netherlands; and the § Paediatric Association of the Netherlands, Utrecht, The Netherlands.

Objective.  End-of-life decisions for newborn infants are usually made with the consent of parents as well as physicians, but may occasionally involve disagreement about which decision is in the best interest of the child. Our study was aimed at providing an empirical background for the ethical discussion on the parent's versus the physician's role in decision-making.

Methods.  We conducted face-to-face interviews with a stratified sample of pediatricians. The response rate was 99%. The most recent decisions in newborn infants to hasten death or not prolong life and the most recent cases in which such decisions were not made because either the parents or the physician objected were comprehensively discussed.

Results.  Decisions to hasten death or not prolong life were usually made after discussing it with parents and did not occur while parents were known to disagree. Situations in which an end-of-life decision was not made because parents did not consent predominantly involved infants with complications of prematurity (24%) or perinatal asphyxia (40%), whereas situations in which parents requested an end-of-life decision that was not acceded to by the pediatrician involved Down syndrome as the main diagnosis in 43% and as a concurrent diagnosis in 21%. Pediatricians afterwards often expressed feelings of discontent about situations in which there had been disagreement with parents.

Conclusions.  The opinion of parents about which medical decision is in the best interest of their child is for pediatricians only decisive in case it invokes the continuation of treatment. The principle of preserving life is abandoned only when the physician feels sufficiently sure that the parents agree that such a course of action is in the best interest of the child.

Key words: infant, life-support, withdrawal, ethics, parents.




This article has been cited by other articles:


Home page
 PediatricsHome page
J. M. Peerzada, J. Schollin, and S. Hakansson
Delivery room decision-making for extremely preterm infants in Sweden.
Pediatrics, June 1, 2006; 117(6): 1988 - 1995.
[Abstract] [Full Text] [PDF]

Home page
 J. Med. EthicsHome page
T Vince and A Petros
Should children's autonomy be respected by telling them of their imminent death?
J. Med. Ethics, January 1, 2006; 32(1): 21 - 23.
[Abstract] [Full Text] [PDF]

Home page
 Arch Pediatr Adolesc MedHome page
A. M. Vrakking, A. van der Heide, W. F. M. Arts, R. Pieters, E. van der Voort, J. A. C. Rietjens, B. D. Onwuteaka-Philipsen, P. J. van der Maas, and G. van der Wal
Medical End-of-Life Decisions for Children in the Netherlands
Arch Pediatr Adolesc Med, September 1, 2005; 159(9): 802 - 809.
[Abstract] [Full Text] [PDF]

Home page
 J. Med. EthicsHome page
R J Boyle, R Salter, and M W Arnander
Ethics of refusing parental requests to withhold or withdraw treatment from their premature baby
J. Med. Ethics, August 1, 2004; 30(4): 402 - 405.
[Abstract] [Full Text] [PDF]

Home page
 Nurs EthicsHome page
B. Store Brinchmann, R. Forde, and P. Nortvedt
What Matters to the Parents? a qualitative study of parents' experiences with life-and-death decisions concerning their premature infants
Nursing Ethics, July 1, 2002; 9(4): 388 - 404.
[Abstract] [PDF]

Home page
 J. Med. EthicsHome page
K. Street, R. Ashcroft, J. Henderson, and A. V Campbell
The decision making process regarding the withdrawal or withholding of potential life-saving treatments in a children's hospital
J. Med. Ethics, October 1, 2000; 26(5): 346 - 352.
[Abstract] [Full Text] [PDF]

Home page
 Arch. Dis. Child. Fetal Neonatal Ed.Home page
M Cuttini, M Rebagliato, P Bortoli, G Hansen, R de Leeuw, S Lenoir, J Persson, M Reid, M Schroell, U de Vonderweid, et al.
Parental visiting, communication, and participation in ethical decisions: a comparison of neonatal unit policies in Europe
Arch. Dis. Child. Fetal Neonatal Ed., September 1, 1999; 81(2): 84F - 91.
[Abstract] [Full Text]

Home page
 JAMAHome page
S. Saigal, B. L. Stoskopf, D. Feeny, W. Furlong, E. Burrows, P. L. Rosenbaum, and L. Hoult
Differences in Preferences for Neonatal Outcomes Among Health Care Professionals, Parents, and Adolescents
JAMA, June 2, 1999; 281(21): 1991 - 1997.
[Abstract] [Full Text] [PDF]