Les prises de décisions éthiques en réanimation néonatale. Enquête auprès des soignants de deux centres français

doi:10.1016/S0929-693X(97)83370-2

Archives de Pédiatrie

Volume 4, Issue 7, July 1997, Pages 662-670

https://doi.org/10.1016/S0929-693X(97)83370-2 Get rights and content

Résumé

Cet article présente les résultats d'une enquête préliminaire qualitative menée dans deux centres français dans le cadre d'une action concertée européenne, Euronic, mise en place pour étudier les opinions et les pratiques des soignants sur l'information des parents et les prises de décision éthiques en réanimation néonatale. L'enquête concerne 23 médecins et infirmières qui ont participé à un entretien anonyme, conduit par une psychologue et enregistré au magnétophone. Leurs réponses indiquent que les arrêts de réanimation font partie intégrante de leur pratique et que les parents ne participent jamais directement à la prise de décision. Les décisions d'arrêt thérapeutique génèrent des souffrances psychiques pour les soignants. Les infirmières pensent être plus impliquées émotionnellement auprès du bébé et de ses parents ; elles déplorent les situations où l'attente et les traitements douloureux se prolongent. La plupart des répondants estiment que l'intervention d'un comité d'éthique ne peut aider dans le processus de décision et que la législation actuelle ne doit pas être changée car elle oblige à une réflexion approfondie, au cas par cas.

Abstract

A European Concerted Action, Euronic, has been set up to study the attitudes and self-reported practices of the staff working in neonatal intensive care units about parent's information and ethical decisonmaking. This paper presents the results of a preliminary qualitative survey conducted in two French units and including 23 physicians and nurses. The answers indicate that withdrawal of treatments are part of their practices. Parents are never directly involved in the decision-making process. The decision to withdraw life sustaining treatments generate psychological distress among the caregivers. Nurses consider that they are more emotionnally involved with the baby and the parents. They express concerns about painful treatments and life-prolonging therapies. Most respondents believe that an ethical committee would be of little help in the decision-making process and that the actual legislation should not be modified as it gives obligation for more in-depth consideration of each case.

Références (53)

DN Walton et al.
Ethical decision making and the critical care team
Crit Care Med
(1986)
MT Stahlman
Ethical issues in the nursery: priorities versus limits
J Pediatr
(1990)
ID Todres
Ethical dilemmas in pediatric critical care
Crit Care Med
(1992)
JH Penticuff
Infant suffering and nurse advocacy in neonatal intensive care
Nurs Clin North Am
(1989)
CA Ryan et al.
No resuscitation and withdrawal of therapy in a neonatal and a pediatric intensive care unit in Canada
J Pediatr
(1993)
A Whitelaw
Death as an option in neonatal intensive care
Lancet
(1986)
H Nishida et al.
Ethical problems in neonatal intensive care unit
BW Levin
International perspectives on treatment choice in neonatal intensive care units
Soc Sci Med
(1990)
FWJ Hazebroek et al.
Withholding and withdrawal of life support from surgical neonates with life-threatening congenital anomalies
J Pediatr Surg
(1993)
A Gorlworth et al.
Ethics and perinatology
(1995)

D Morgan et al.

Ethics and neonatal care

Br J Obstet

(1989)

JD Lantos et al.

Withholding and withdrawing life sustaining treatment in neonatal intensive care: issues for the 1990s

Arch Dis Child

(1994)

JW Walters

Approaches to ethical decision making in the neonatal intensive care unit

Am J Dis Child

(1988)

SC Ragatz et al.

Decisions to withdraw life support in the neonatal intensive care unit

Clin Pediatr

(1983)

M Dehan

L'éthique et sa pratique en néonatologie

WA Silverman

Overtreatment of neonates?

PM Dunn

Life saving intervention in the neonatal period: dilemmas and decisions

Arch Dis Child

(1990)

AGM Campbell

Which infants should not receive intensive care?

Arch Dis Child

(1982)

WE Benitz

A paradigm for making difficult choices in the intensive care nursery

Cambridge Q Health Care Ethics

(1993)

PJJ Sauer

Ethical decision in neonatal intensive care units: the Dutch experience

Pediatrics

(1992)

M Dehan

Problèmes éthiques soulevés par la réanimation néonatale

Méd Sci

(1993)

F Gold et al.

La décision d'arrêt thérapeutique en réanimation néonatale

Arch Fr Pédiatr

(1992)

JA Erlen

Ethical dilemmas in the high-risk nursery: wilderness experiences

J Pediatr News

(1994)

AJ Stewart

Dilemmas in neonatal units

Prof Nurse

(1990)

ML Chiswick

Withdrawal of life support in babies: deceptive signals

Arch Dis Child

(1990)

PA Miya et al.

Ethical issues described by NICU nurses

J Clin Ethics

(1991)

Cited by (30)

Neonatal end-of-life decisions and bioethical perspectives
2009, Early Human Development
In the nineties the EURONIC project documented the staff views and practices regarding ethical decision-making in neonatal intensive care units of eight Western Europe countries: France, Germany, Great Britain, Italy, Luxembourg, Netherlands, Spain and Sweden. This paper reviews the changes occurred in the ethical and legal background of these countries, and discusses possible influences on neonatal care practices. To a certain extent, many of these changes appear to be in line with the neonatal physicians' views and attitudes previously documented by the EURONIC project, while some are not. Large differences persist within Western Europe on what constitutes appropriate neonatal end-of-life care.
End-of-life decisions in a neonatal intensive care unit: Practices and attitudes of the healthcare staff
2007, Ethique et Sante
Cet article présente les résultats d’une enquête menée dans le service de réanimation néonatale d’un CHU dans le but d’étudier les pratiques, les opinions et le vécu des soignants sur la décision de fin de vie dans l’unité. L’enquête a concerné 41 personnes, 24 infirmières et 17 médecins. Plus de la moitié des personnes interrogées désire mettre en place des réunions d’équipe pour mieux cerner les indications, harmoniser la mise en pratique de cette décision et le discours avec les parents.
L’article analyse aussi les cas de décès néonataux survenus dans les dix dernières années suite à une décision éthique. Le plus fréquemment, il s’agit d’enfants nés à terme avec une asphyxie périnatale ou des prématurés ayant des lésions cérébrales.
This paper presents the results of a qualitative survey conducted in a neonatal intensive care unit to study the practices and attitudes of the staff about ethical decision making processes. We reviewed also the charts of all newborns who died in our hospital in the last past decade after an end-of-life decision. Diagnosis included the most frequently encephalopathy after perinatal asphyxia or severe cerebral parenchymal bleeding in preterm babies. The questionnaire was returned by 24 nurses and 17 physicians and more than a half would like a team discussion to take place to establish medical criteria assessment and provide clear advice to parents.
Medical end-of-life decisions in neonates and infants in Flanders
2005, Lancet
Citation Excerpt :
Furthermore, there could be a greater tendency to withhold (or withdraw) treatment in children with congenital malformations.2,11 Most studies of medical practice at the end of life in neonates and infants are based on surveys of physicians.1,6–10,12 Because the physician is the unit of analysis, all such studies have failed to make reliable estimates of the frequency of decisions at the end of life.
Paediatricians are increasingly confronted with end-of-life decisions in critically ill neonates and infants. Little is known about the frequency and characteristics of end-of-life decisions in this population, nor about the relation with clinical and patients' characteristics.
A death-certificate study was done for all deaths of neonates and infants in the whole of Flanders over a 12 month period (August, 1999, to July, 2000). We sent an anonymous questionnaire by mail to the attending physician for each of the 292 children who died under the age of 1 year. Information on patients was obtained from national registers. An attitude study was done for all physicians who attended at least one death during the study period.
253 (87%) of the 292 questionnaires were returned, and 121 (69%) of the 175 physicians involved completed the attitude questions. An end-of-life decision was possible in 194 (77%; 95% CI 70·4–82·4) of the 253 deaths studied, and such a decision was made in 143 cases (57%; 48·9–64·0). Lethal drugs were administered in 15 cases among 117 early neonatal deaths and in two cases among 77 later deaths (13% vs 3%; p=0·018). The attitude study showed that 95 (79%; 70·1–85·5) of the 121 physicians thought that their professional duty sometimes includes the prevention of unnecessary suffering by hastening death and 69 (58%; 48·1–66·5) of 120 supported legalisation of life termination in some cases.
Death of neonates and infants is commonly preceded by an end-of-life decision. The type of decision varied substantially according to the age of the child. Most physicians favour legalisation of the use of lethal drugs in some cases.
Multicentric study on neonatal medical pain management in the Nord-Pas-de-Calais
2003, Archives de Pediatrie
Le but de l’étude était de décrire les modalités de prise en charge de la douleur du nouveau-né dans les unités de réanimation et de médecine néonatale à l’échelle d’une région, le Nord–Pas-de-Calais.
Population et méthodes. – Un questionnaire a été adressé aux 52 médecins des 12 services accueillant des nouveau-nés, dont 6 comportent une unité de réanimation. Il était conçu pour explorer l’évaluation, le traitement et l’organisation de la prévention de la douleur.
Résultats. – Quarante réponses (77 %) ont été obtenues. Onze services déclaraient être sensibilisés au problème de la douleur. L’outil d’évaluation de la douleur était l’Échelle « Douleur et Inconfort du Nouveau-né » (ÉDIN). Un traitement antalgique était administré dans 100 % des cas pour la pose d’un drain pleural, dans 92 % des cas pour la pose d’un cathéter central chez l’enfant ventilé et dans 91 % des cas en présence d’entérocolite ulcéro-nécrosante, sous ventilation assistée. Les antalgiques prescrits étaient le propacétamol, la nalbuphine ou le fentanyl, associés parfois à une sédation par midazolam ou diazépam. La crème Emla^® était utilisée avant la ponction lombaire dans 80 % des cas au sein des services de réanimation néonatale et dans 92 % des cas au sein des services de médecine néonatale. Trois services de réanimation néonatale et 4 services de médecine néonatale employaient le saccharose lors de prélèvements sanguins.
Conclusion. – La sensibilisation à la douleur des différents services de réanimation et de médecine néonatale ne garantissait pas, au moment de l’étude, une prise en charge optimale du nouveau-né algique. L’attitude des néonatologistes face à la douleur restait hétérogène.
The aim of this study was to describe pain management for newborn infants in neonatal intensive care units and neonatal units in the Nord–Pas-de-Calais.
Patients and methods. – A questionnaire was distributed to the 52 physicians practising in the six neonatal intensive care units and six neonatal units. The questions were in reference to pain assessment, treatment and prevention.
Results. – Forty questionnaires were completed (77%). Eleven units proclaimed an interest in neonatal pain management. The tool for assessing pain was the EDIN scale (Echelle Douleur Inconfort Nouveau-né, neonatal pain and discomfort scale). Analgesic treatment was administered in 100% of cases for the insertion of chest tube, in 92% of cases for the insertion of percutaneous central catheter in a ventilated newborn infant and in 91% of cases for necrotizing enterocolitis requiring a mechanical ventilation. Prescribed analgesic drugs were propacetamol, nalbuphin or fentanyl; a sedation by midazolam or diazepam was occasionally associated. Emla^® cream was used before lumbar puncture in 80% of cases in the neonatal intensive care units and in 92% of cases in the neonatal units. Three neonatal intensive care units and four neonatal units administered a sucrose solution for blood samples.
Conclusion. – At the time of study, the interest in the pain of the physicians working in neonatal intensive care units and neonatal units was inadequate to guarantee an optimum management of pain in newborn infants. Physicians’ approach remained heterogeneous.
Development of ethics in perinatalogy (1960-2000): Toward convergence and coherence of prenatal and postnatal issues and major consideration of parental concerns
2003, Journal de Pediatrie et de Puericulture
Summary - Ethical dilemmas in the perinatal period: Guidelines for end-of-life decisions and practice
2001, Archives de Pediatrie
D’après plusieurs enquêtes récentes, la moitié environ des décès qui ont lieu actuellement dans les services français de réanimation néonatale résultent d’une décision médicale de fin de vie. Partant de ce constat, la Fédération nationale des pédiatres néonatologistes a considéré qu’il entrait dans ses attributions de publier des lignes générales de conduite dans ce domaine délicat et controversé. Ses recommandations comportent successivement : les définitions adoptées, les situations cliniques rencontrées avant, au moment, et après la naissance, les obligations de l’équipe médicale et soignante, et les spécificités de certaines circonstances et procédures particulières.
According to several recent surveys, around 50% of the deaths occurring nowadays in French neonatal intensive care units result from a medical decision. This has led French neonatologists to set up guidelines for end-of-life decisions and practice in the perinatal period, which are presented in this paper. It covers definitions, clinical situations, ethical principles, obligations of the medical and nursing staff, and specific conditions where dilemmas occur.

View all citing articles on Scopus

View full text

PédopsychiatrieLes prises de décisions éthiques en réanimation néonatale. Enquête auprès des soignants de deux centres françaisEthical decisions making in neonatal intensive care. Results of a survey in two French units

Résumé

Abstract

Crit Care Med

J Pediatr

Crit Care Med

Nurs Clin North Am

J Pediatr

Lancet

Soc Sci Med

J Pediatr Surg

Ethics and perinatology

Ethics and neonatal care

Br J Obstet

Withholding and withdrawing life sustaining treatment in neonatal intensive care: issues for the 1990s

Arch Dis Child

Approaches to ethical decision making in the neonatal intensive care unit

Am J Dis Child

Decisions to withdraw life support in the neonatal intensive care unit

Clin Pediatr

L'éthique et sa pratique en néonatologie

Overtreatment of neonates?

Life saving intervention in the neonatal period: dilemmas and decisions

Arch Dis Child

Which infants should not receive intensive care?

Arch Dis Child

A paradigm for making difficult choices in the intensive care nursery

Cambridge Q Health Care Ethics

Ethical decision in neonatal intensive care units: the Dutch experience

Pediatrics

Problèmes éthiques soulevés par la réanimation néonatale

Méd Sci

La décision d'arrêt thérapeutique en réanimation néonatale

Arch Fr Pédiatr

Ethical dilemmas in the high-risk nursery: wilderness experiences

J Pediatr News

Dilemmas in neonatal units

Prof Nurse

Withdrawal of life support in babies: deceptive signals

Arch Dis Child

Ethical issues described by NICU nurses

J Clin Ethics

Pédopsychiatrie
Les prises de décisions éthiques en réanimation néonatale. Enquête auprès des soignants de deux centres françaisEthical decisions making in neonatal intensive care. Results of a survey in two French units