Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
Child's Nervous System
Published in: Child's Nervous System 1/2008

Open Access 01-01-2008 | Invited Paper

Deliberate termination of life of newborns with spina bifida, a critical reappraisal

Author: T. H. Rob de Jong

Published in: Child's Nervous System | Issue 1/2008

Login to get access

Abstract

Objects

Deliberate termination of life of newborns (involuntary euthanasia) with meningomyelocele (MMC) is practiced openly only in the Netherlands. ‘Unbearable and hopeless suffering’ is the single most cited criterion for this termination, together with the notion that ‘there are no other proper medical means to alleviate this suffering’. In this paper, both (and other) statements are questioned, also by putting them in a broader perspective.

Methods

First, a historical overview of the treatment of newborns with MMC is presented, concentrating on the question of selection for treatment. Second, a thorough analysis is made of the criteria used for life termination. Third, a case of a newborn with a very severe MMC is presented as a ‘reference case’.

Conclusion

‘Unbearable and hopeless suffering’ cannot be applied to newborns with MMC. They are not ‘terminally ill’ and do have ‘prospects of a future’. In these end-of-life decisions, ‘quality of life judgments’ should not be applied. When such a newborn is not treated, modern palliative care always will suffice in eliminating possible discomfort. There is no reason whatsoever for active life-termination of these newborns.
Literature
1.
Amacher AL, Wellington J (1984) Infantile hydrocephalus: long-term results of surgical therapy. Child Brain 11:217–229CrossRef
2.
Anonymous (1979) Non-treatment of defective newborn babies. Lancet 1123–1124
3.
Barf HA (2003) Cognitive status of young adults with spina bifida. Dev Med Child Neurol 45:813–820PubMedCrossRef
4.
Barf HA, Verhoef M, Post MWM, Jennekens-Schinkel A, Gooskens RHJM, Mullaart RA, Prevo AJH (2004) Educational career and predictors of type of education in young adults with spina bifida. Int J Rehabil Res 27:45–52PubMedCrossRef
5.
Beeker TW, Scheers MM, Faber JAJ, Tulleken CAF (2006) Prediction of independence and intelligence at birth in meningomyelocele. Child’s Nerv Syst 22(1):33–37CrossRef
6.
Beijk MM (1998) Ondraaglijk lijden. Med Contact 24:825–827 (in Dutch)
7.
8.
9.
Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA (2001) Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg 34:114–120PubMedCrossRef
10.
Bruner J, Tulipan N (2004) Tell the truth about spina bifida. Ultrasound Obstet Gynecol 24:595–596PubMedCrossRef
11.
Chervenak FA, McCullough LB, Arabin B (2006) Why the Groningen Protocol should be rejected. Hastings Center Report, Sept–Oct 2006, pp. 30–34
12.
Clancy CA, McGrath PJ, Oddson BE (2005) Pain in children and adolescents with spina bifida. Dev Med Child Neurol 47:27–34PubMedCrossRef
13.
Cornel MC, Leurquin P, de Walle HEK, Staal-Schreinemakers AL, Beekhuis JR (1997) Epidemiologie van prenatale diagnostiek en selectieve zwangerschapsafbreking vanwege foetale neuralebuisdefecten in Nederland in vergelijking met andere Europese landen. Ned Tijdschr Geneeskd 141:2239–2244 (in Dutch)PubMed
14.
Cragan JD, Roberts HE, Khoury MJ, Kirby RS, Shaw GM, Velie EM, Merz RD, Forrester MB, Williamson RA, Krishnamuriti DS, Stevenson RE, Dean JH (1995) Surveillance for anencephaly and spina bifida and the impact of prenatal diagnosis—United States, 1985–1994. MMWR CDC Surveillance Summaries 44:1–23
15.
Crul BVM, Legemaate J (2007) Euthanasie en coma. Med Contact 62(10):436 (in Dutch)
16.
Davies D, de Vlaming D (2006) Symptom control at the end-of-life. Oxford Textbook of Palliative Care for Children, pp. 502–505, 507
17.
Delight E, Goodall J (1988) Babies with spina bifida treated without surgery: parents views on home versus hospital care. BMJ 297:1230–1233PubMedCrossRef
18.
Delight E, Goodall J (1990) Love and loss. Conversations with parents of babies with spina bifida managed without surgery, 1971–1981. Dev Med Child Neur 32(Suppl 61):1–58
19.
Dorscheidt JHHM (2006) Levensbeëindiging bij gehandicapte pasgeborenen. Strijdig met het non-discriminatiebeginsel? (Medical termination of disabled neonatal life. Compatible with the principle of non-discrimination?) Thesis, State-University Groningen, Sdu: Den Haag, 2006. (in Dutch)
20.
Edwards RJ, Witchell C, Pople IK (2003) Chronic headaches in adults with spina bifida and associated hydrocephalus. Eur J Pediatr Surg 13:S13–S17PubMedCrossRef
21.
22.
Frazier CH (1935) Surgery of the Spine and Spinal Cord. Appleton & Co., NY and London, pp. 303ff
23.
Freeman JM (1984) Early management and decision making for the treatment of myelomeningocele: a critique. Pediatrics 73:564–566PubMed
24.
Freeman JM (1987) Making decisions for the severely handicapped newborn. J Health Polit Policy Law 11:285–294
25.
Freeman JM (1998) Changing ethical issues in the treatment of spina bifida: a personal odyssey. Ment Retard Dev Disabil Res Rev 4:302–307CrossRef
26.
Griffiths J, Bood A, Weyers H (1998) Euthanasia and law in the Netherlands. Amsterdam University press, Amsterdam
27.
Gross RH, Cox A, Tatyrek R, Pollay M, Barnes WA (1983) Early management and decision making for the treatment of myelomenigocele. Pediatrics 72:450–458PubMed
28.
Hain RDW, Miser A, Devins M, Wallace WHB (2005) Strong opioids in pediatric palliative medicine. Pediatric Drugs 7(1):1–9PubMedCrossRef
29.
Hamburg F (2005) Een computermodel voor het ondersteunen van euthanasiebeslissingen. Thesis, University of Leiden (in Dutch)
30.
Hertogh CMPM (1988) Ethische weging van dilemma’s ontstaan door selectieve behandeling van de pasgeborene met spina bifida. Ned Tijdschr Geneeskd 132(45):2070–2073 (in Dutch)PubMed
31.
Hetherington R, Dennis M, Barnes M, Drakes J, Gentili F (2006) Functional outcome in young adults with spina bifida and hydrocephalus. Child’s Nerv Syst 22:117–124CrossRef
32.
Hunt GM, Oakeshott P (2003) Outcome in people with open spina bifida at age 35: prospective community based cohort study. BMJ 326:1365–1366PubMedCrossRef
33.
Iddon J, Morgan D, Loveday C, Sahakian B, Pickard J (2004) Neuropsychological profile of young adults with spina bifida with or without hydrocephalus. J Neurol Neurosurg Psychiatry 75:1112–1118PubMedCrossRef
34.
35.
Jong de T, van Lindert E, Kompanje E, Rotteveel J (2006) Laten sterven of doen sterven. Med Contact 61(16):669–671 (in Dutch)
36.
Jotkowitz AB, Glick S (2006) The Groningen Protocol: another perspective. J Med Ethics 32:157–158PubMedCrossRef
37.
Klotzko AJ (1997) What kind of life? What kind of death? An interview with Dr. Henk Prins. Bioethics 11:24–42PubMedCrossRef
38.
Kompanje EJO, de Jong THR, Arts WFM, Rotteveel JJ (2005) Problematische basis voor ‘uitzichtloos en ondraaglijk lijden’ als criterium voor actieve levensbeëindiging bij pasgeborenen met spina bifida. Ned Tijdschr Geneeskd 149(37):2067–2069 (in Dutch)PubMed
39.
Laane HM (2005a) Actieve levensbeëindiging bij pasgeborenen in Nederland; analyse van alle 22 meldingen uit 1997/’04. Ned Tijdschr Geneeskd 149(20):1134 (in Dutch)PubMed
40.
Laane HM (2005b) Actieve levensbeëindiging bij pasgeborenen in Nederland; analyse van alle 22 meldingen uit 1997/’04. Ned Tijdschr Geneeskd, 149(49):2762–2733 (in Dutch)PubMed
41.
de Lange SA (1974a) Een enquete over de behandeling van pasgeborenen met spina bifida aperta. Med Contact 29:887–890 (in Dutch)
42.
Lange de SA (1974b) Selection for treatment of patients with spina bifida aperta. Proceedings of the Society for research into hydrocephalus and spina bifida Gothenburg 27–30, 12–15 June 1974
43.
Lingen van R (2000) Pain assessment and analgesia in the newborn: an integrated approach. Thesis, University of Rotterdam
44.
Lorber J (1971) Results of treatment of myelomeningocele: an analysis of treatment of 524 unselected cases with special reference to possible selection for treatment. Dev Med Child Neurol 13:279–303PubMedCrossRef
45.
Manninen BA (2006a) A case for justified non-voluntary active euthanasia: exploring the ethics of the Groningen Protocol. J Med Ethics 32:643–651PubMedCrossRef
46.
Manninen BA (2006b) Regarding the Groningen Protocol. J Med Ethics 23, November 2006
47.
Mataró M, Junqué C, Poca M, Sahuquillo J (2001) Neuropsychological Findings in Congenital and Acquired Childhood Hydrocephalus. Neuropsychol Rev 11(4):169–178PubMedCrossRef
48.
McLone D (1982) Results of treatment of children born with a myelomeningocele. Clin Neurosurg 30:407–412
49.
McLone D (1985) Treatment of myelomeningocele: arguments against selection. Clin Neurosurg 33:359–370
50.
Mitchell LE, Adzick NS, Melchionne J, Pasquariello PS, Sutton LN, Whitehead AS (2004) Spina bifida. Lancet 364:1885–1895PubMedCrossRef
51.
Newman J (1987) Making decisions for the severely handicapped newborn. J Health Polit Policy Law 11:294–297
52.
Oakeshott P, Hunt GM (2003) Long-term outcome in open spina bifida. Br J Gen Pract 53:632–636PubMed
53.
Olde Scholtenhuis MAG, Cohen-Overbeek TE, Offringa M, Barth PG, Stoutenbeek P, Gooskens RH, Wladimiroff JW, Bilardo CM (2003) Audit of prenatal and postnatal diagnosis of isolated open spina bifida in three university hospitals in The Netherlands. Ultrasound Obstet Gynecol 21:48–52PubMedCrossRef
54.
Padua L, Rendeli C, Rabine A, Firardi E, Tonali P, Salvaggio E (2002) Health-related quality of life and disability in young patients with spina bifida. Arch Phys Med Rehabil 83:1384–1388PubMedCrossRef
55.
Pit-ten Cate IM, Kennedy C, Stevenson J (2002) Disability and quality of life in spina bifida and hydrocephalus. Dev Med Child Neurol 44:317–322CrossRef
56.
Playfor S, Jenkins I, Boyles C, Choonara I, Davies G, Haywood T, Hinson G, Mayer A, Morton N, Ralph T, Wolf A (2006) United Kingdom Paediatric Intensive Care Society Sedation Analgesia and Neuromuscular Blockade Working Group (2006). Consensus guidelines on sedation and analgesia in critically ill children. Intensive Care Med 32(8):1125–1136PubMedCrossRef
57.
Prins SA (2005) Under a watchful eye...New medication and monitoring of sedation and analgesia in pediatric intensive care. Thesis, University of Rotterdam
58.
Rendeli C, Ausili E, Tabacco F, Caliandro P, Aprile I, Tonali P, Salvaggio E, Padua L (2005) Assessment of health status in children with spina bifida. Spinal Cord 1:1–6
59.
Rotteveel JJ, Mullaart RA, Gabreels FJM, Van Overbeek JJ (1996) Actieve levensbeeindiging bij pasgeborenen met spina bifida? Ned Tijdschr Geneeskd 140:323–324 (in Dutch)PubMed
60.
Sauer PJJ (2001) Ethical dilemmas in neonatology: recommendations of the Ethics Working Group of the CESP (Confederation of European Specialists in Paediatrics). Eur J Pediatr 160:364–368PubMedCrossRef
61.
Saugstad OD (2005) When newborn infants are bound to die. Acta Paediatr 1535–1537
62.
Sawin KJ, Brei TJ, Buran CF, Fastenau PS (2002) Factors associated with quality of life in adolescents with spina bifida. J Holist Nurs 20:279–304PubMedCrossRef
63.
Sawyer SM, Roberts KV (1999) Sexual and reproductive health in young people with spina bifida. Dev Med Child Neurol 41:671–675PubMedCrossRef
64.
Schoenmakers M (2003) Functional aspects of spina bifida in childhood. Thesis, University of Utrecht
65.
Seller MJ (1990) Is antenatal selection for spina bifida possible? BMJ 251–252
66.
Smith ED (1965) Spina bifida and the total care of spinal myelomeningocele. Charles C Thomas, Springfield
67.
Snow J, Prince M, Souheaver G, Ashcraft E, Stefans V, Edmonds J(1994) Neuropsychological patterns of adolescents and young adults with spina bifida. Arch Clin Neuropsychol 9(3):277–287PubMedCrossRef
68.
Steinbok P, Irvine PB, Cochrane DD, Irwin BJ (1992) Long-term outcome and complications of children born with meningomyelocele. Child’s Nerv Syst 8:92–96CrossRef
69.
Sutton LN (1985) Myelomeningocele—the question of selection. Clin Neurosurg 33:371–381
70.
Tuli S, Drake J, Lamberti-Pasculli M (2003) Long-term outcome of hydrocephalus management in myelomeningoceles. Child’s Nerv Syst 19:286–291CrossRef
71.
72.
van de Vathorst S (2003) De dood als beste optie. Med Contact 58:1471–1473 (in Dutch)
73.
Verhagen AAE, Sol JJ, Brouwer OF, Sauer PJ (2005a) Actieve levensbeeindiging bij pasgeborenen in Nederland; analyse van alle 22 meldingen uit 1997/’04. Ned Tijdschr Geneeskd 149:183–188 (in Dutch)PubMed
74.
Verhagen AAE, Sol JJ, Brouwer OF, Sauer PJ (2005b) Ned Tijdschr Geneeskd, 149(20):1135 (in Dutch)
75.
Verhagen A, Sauer P (2005c) End-of-life decisions in newborns: an approach from the Netherlands. Pediatrics 116:736–739PubMedCrossRef
76.
Verhagen E, Sauer PJJ (2005d) The Groningen Protocol—euthanasia in severely ill newborns. New Engl J Med 352:959–962PubMedCrossRef
77.
Verhoef M (2005) Spina bifida: implications for functioning and health in young adults. Thesis, University of Utrecht
78.
Visser de E (2005) Moord volgens protocol. Volkskrant 22 January 2005 (in Dutch)
79.
Zachary RB (1977) Life with spina bifida. BMJ:1460–1462
Metadata
Title
Deliberate termination of life of newborns with spina bifida, a critical reappraisal
Author
T. H. Rob de Jong
Publication date
01-01-2008
Publisher
Springer-Verlag
Published in
Child's Nervous System / Issue 1/2008
Print ISSN: 0256-7040
Electronic ISSN: 1433-0350
DOI
https://doi.org/10.1007/s00381-007-0478-3

Other articles of this Issue 1/2008

Child's Nervous System 1/2008 Go to the issue

Case Report

Ethylenevinylalcohol copolymer (Onyx-18) used in endovascular treatment of vein of Galen malformation

Original Paper

Neuroprotective effects of high-dose vs low-dose melatonin after blunt sciatic nerve injury

Case Report

Incontinentia pigmenti mimicking a herpes simplex virus infection in the newborn

Commentary

Deliberate termination of life of newborns with spina bifida

Commentary

Deliberate termination of life of newborns with spina bifida

Case Report

Atypical teratoid/rhabdoid tumour: 7-year event-free survival with gross total resection and radiotherapy in a 7-year-old boy