Legal aspects of the withholding and withdrawing of intensive care in extremely premature infants

Medicine and Law

Volumn 28, Issue 4, 2009, Pages 581-591

  Delbeke, Evelien ^a  

^a UNIVERSITY OF ANTWERP   (Belgium)

Author keywords

End of life; Extremely premature infants; Final decision maker; Intensive care; Non treatment decisions

Indexed keywords

ARTICLE; DECISION MAKING; ETHICS; GESTATIONAL AGE; HUMAN; INTENSIVE CARE; LEGAL ASPECT; NEWBORN; PREMATURITY; TREATMENT WITHDRAWAL;

DECISION MAKING; GESTATIONAL AGE; HUMANS; INFANT, NEWBORN; INFANT, PREMATURE; INTENSIVE CARE; WITHHOLDING TREATMENT;

EID: 74849095149     PISSN: 07231393     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Conference Paper

References (60)

1. E.g. EPICURE (UK): N. WOOD, e.a., "Neurologic and developmental disability after extremely preterm birth", New England Journal of Medicine 2000, 378-384;
2. N. MARLOW, e.a., "Neurologic and developmental disability at six years of age after extremely preterm birth", New England Journal of Medicine 2005, 9-19.
3. P. VANHAESEBROUCK, e.a., "The EPIBEL Study: outcomes to discharge from hospital for extremely preterm infants in Belgium", Pediatrics 2004,663-675.
4. DE GROOTE, P. VANHAESEBROUCK, e.a., "Outcome at 3 years of age in a population- based cohort of extremely preterm infants", Obstetrics & Gynecology 2007, 855-864.
5. M. Pignotti en G. Donzelli, "Perinatal care at the threshold of viability: an international comparison of practical guidelines for the treatment of extremely preterm births", Pediatrics 2008, (el93) el97;
6. X., "International guidelines for neonatal resuscitation: an excerpt from the guidelines 2000 for cardiopulmonary resuscitation and emergency cardiovascular care: international consensus on science", Pediatrics 2000, e29, 14;
7. Nuffield Council on Bioethics, "Critical care decisions in fetal and neonatal medicine: ethical issues", http://www.nuffieldbioethics.org. 2006, 74-75;
8. American Heart Association, "2005 American Heart Association (AHA) guidelines for cardiopulmonary resuscitation (CPR) and emergency cardiovascular care (ECC) of pediatric and neonatal patients: neonatal resuscitation guidelines", Pediatrics 2006, (el029) el035.
9. American Heart Association, I.c., el035 ;
10. M. Pignotti en G. Donzelli, I.c., el97;
11. Nuffield Council on Bioethics, o.c., 155;
12. X., "Medisch beleid bij extreme vroeggeboorte (gezamenlijke richtlijn NVK en NVOG)", http://www.nvk.pedianet.nl/pdfs/notaverwijzing perinatologisch centrurn 2007 def.ndf. 14 (consulted April 18th 2008).
13. T. Berger, e.a., "Swiss Society of Neonatology: Recommendations for the care of infants born at the limit of viability (gestational age 22-26 weeks)", 2002.http://www.neonet.ch/assets/doc/ Infants born at the limit of viability-enelish final.pdf.7.
14. An APGAR-score is an evaluation of an infant's physical condition at birth, in which respiration, heart rate, reflex activity, colour and muscle tone are each rated zero, one or two.
15. In 1986 Rhoden differentiated three approaches, but since then the approaches have become more varied (N. Rhoden, "Treating Baby Doe: the ethics of uncertainty", Hastings Center Report 1986, 34-42).
16. X., "Medisch beleid bij extreme vroeggeboorte (gezamenlijke richtlijn NVK en NVOG)", I.c., 13-14.
17. T. Berger, I.c., 1 and 7.
18. G. Greisen, "Managing births at the limit of viability: the Danish experience", Seminars in Fetal & Neonatal Medicine 2004,453-457.
19. The Baby Doe-regulations were the American federal government's response to two cases concerning non-treatment decisions in seriously disabled infants (Baby Doe). According to these regulations, hospitals can lose their federal funding if they do not provide all newborns with maximal life-prolonging treatment (except under certain specified conditions).
20. E.g. the English Nuffield Council on Bioethics defends this approach for infants born at 23 weeks gestation: Nuffield Council on Bioethics, o.c, 155-156.
21. R. De Leeuw, e.a., "Treatment choices for extremely preterm infants: an international perspective", Journal of Pediatrics 2000, (608) 611;
22. X., Fetuses and newborn infants at the treshold of viability. A framework for practice, 2000, http://www.bapm.org/media/documents/ publications/treshold.pdf. 3.
23. Committee on Fetus and Newborn, "Noninitiation or withdrawal of intensive care for highrisk newborns", Pediatrics 2007,401 -403;
24. American College of Obstetricians and Gynecologists, "Perinatal care at the threshold of viability. ACOG Practice Bulletin: Clinical management guidelines for obstetrician-gynecologists", Obstetrics and Gynecology 2002, 617-624
25. R. De Leeuw, e.a., I.c., 611 ;
26. Groupe Francophone de Réanimation et Urgences Pédiatriques (GFRUP), Limitation ou arrêt des traitements en réanimation pédiatrique. Repères pour la pratique, Pantin, Imprimerie Delcambre, 2002,20.
27. P. Vanhaesebrouck, "Neonatale intensieve zorgen: hoe klein kan men gaan?", 2000, http://www.vvkindergeneeskunde.be/pdf/NIC%20hoe%20klein.pdf. 5.
28. Whether the infant's condition is "hopeless" cannot be determined on the basis of statistics and probabilities but requires assessment of the infant's actual condition once the infant is stable (Stewart-Graves v. Vaughn, 162 Wash.2d 115).
29. In the Texan case Miller v. HCA, the Texas Supreme Court ruled that no fully informed decision about the treatment of an extremely premature baby could be made until birth, as the condition of the infant can only be correctly evaluated at that time (Miller v. HCA, 118 S.W.3d 758).
30. E.g. anencephaly, trisomy 13 or trisomy 18.
31. Article 1111-13 Code de la Santé Publique; P. Hubert, P. Canoui, R. Cremer en F. Leclerc, "Limitations et arrêts de traitements actifs en réanimation pédiatrique : recommandations du GFRUP", Archives de pédiatrie 2005, (1501) 1506.
32. Baby Jeremy, Rb. Utrecht 11 januari 1991, Nederlands Tijdschrift voor Gezondheidsrecht 1991, 180;
33. H. Leenen, Handboek Gezondheidsrecht. Deel I: Rechten van mensen in de gezondheidszorg, Houten/Diegem, Bohn Stafleu van Loghum, 2000, 371.
34. UK :Re c., 1990 Fam. 26; Re J., 1991 Fam. 33;
35. Re C, (1998) 40 B.M.L.R. 31;
36. Re L., 2004 E.W.H.C. 2713;
37. An NHS Trust v. A., 2007 E.W.H.C. 1696.
38. Nuffield Council on Bioethics, o.c., 156;
39. H. Kuhse en P. Singer, Should the baby live? The problem of handicapped infants, Oxford, Oxford University Press, 1985, 184;
40. K. Kovach, "Neonatology. Life and death decisions: can mediation help?", 28 Cap. U. L. Rev. 265;
41. P. Phillips, "Treatment decisions for seriously ill newborns: who should decide?", 21 Cap. U. L. Rev. 946.
42. P. Phillips, I.c., 950-951;
43. S. Mclean, Old law, new medicine, London, Pandora, 1999,129;
44. H. Kuhse en P. Singer, o.c, 183.
45. P. Phillips, I.c., 956.
46. In Belgium, medical treatments are only legally justified if they have a certain therapeutic purpose, which cannot be said of ineffective treatment. If the patient can prove damage (e.g. moral damage due to emotional distress of the treatment), he is entitled to compensation.
47. Superintendent of Belchertown State School v. Saikewicz, 370 N.E.2d 417 (Mass. 1977);
48. P. Phillips, I.c., 151.
49. P. Phillips, I.c., 959.
50. P. Phillips, I.c., 960.
51. S. Mclean, o.c., 127;
52. K. Knepper, "Withholding medical treatment from infants: when is it child neglect?", 33 U. Louisville J. Fam. L. 31.
53. X., Fetuses and newborn infants at the treshold of viability. A frameworkfor practice, I.c., 1-2.
54. S. Mclean, o.c., 127;
55. M. Davies, Textbook on medical law, London, Blackstone Press Ltd., 1998, 341.
56. See also P. Phillips, I.c., 962.
57. There are different ways of informing the parents. In the neutral informed consent-model, the physician merely informs the parents about the child's diagnosis and prognosis, without giving his own point of view. In the-preferred-negotiated-model, the physician uses his own medical knowledge, expertise and experience to guide the family through the decision-making process, without forcing his opinion upon the parents. In the assent-model the physician proposes a certain treatment course in which parents can consent or which they can refuse. Sources: A. Payot, e.a., "Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision?", Social Science & Medicine 2007, (1487) 1490;
58. S. Leuthner, "Decisions regarding resuscitation of the extremely premature infant and models of best interest", Journal of Perinatology 2001, (193) 194;
59. J. Lorenz, "Ethical dilemmas in the care of the most premature infants: the waters are murkier than ever", Current Opinions in Pediatrics 2005,(186) 188.
60. Miller v. A, 118 S.W.3d 758.