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

Child's Nervous System

Volumn 24, Issue 1, 2008, Pages 13-28

  Jong, T H Rob ^a  

^a SOPHIA CHILDREN S HOSPITAL   (Netherlands)

Author keywords

Groningen Protocol; Meningomyelocele; Newborn; Pain; Palliative care; Quality of life; Suffering; Termination of life

Indexed keywords

ALPHA FETOPROTEIN; ANALGESIC AGENT; ANTICONVULSIVE AGENT; CHLORAL HYDRATE; MORPHINE; OPIATE; PARACETAMOL;

ARTICLE; COMPUTER ASSISTED TOMOGRAPHY; DRUG SAFETY; EUTHANASIA; HEADACHE; HEALTH BELIEF; HUMAN; HYDROCEPHALUS; INVOLUNTARY EUTHANASIA; LEGAL ASPECT; LIFE EXPECTANCY; LOW DRUG DOSE; MEDICAL DECISION MAKING; MEDICAL ETHICS; MENINGOMYELOCELE; NETHERLANDS; NEWBORN; NEWBORN CARE; NONVERBAL COMMUNICATION; PAIN; PALLIATIVE THERAPY; PARENT COUNSELING; PATIENT RIGHT; PATIENT SELECTION; PHYSICIAN ATTITUDE; PRACTICE GUIDELINE; PRIORITY JOURNAL; QUALITY OF LIFE; RIGHT TO LIFE; RISK BENEFIT ANALYSIS; SEIZURE; SPINA BIFIDA; SURVIVAL; TERMINAL DISEASE; VERBAL COMMUNICATION;

DECISION MAKING; ETHICS, MEDICAL; EUTHANASIA, ACTIVE; FEMALE; HUMANS; INFANT, NEWBORN; MALE; NETHERLANDS; QUALITY OF LIFE; SPINAL DYSRAPHISM;

EID: 36549059212     PISSN: 02567040     EISSN: None     Source Type: Journal    
DOI: 10.1007/s00381-007-0478-3     Document Type: Article

References (79)

1. Amacher AL, Wellington J (1984) Infantile hydrocephalus: Long-term results of surgical therapy. Child Brain 11:217-229
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 45:813-820
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 27:45-52
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):33-37
6. Beijk MM (1998) Ondraaglijk lijden. Med Contact 24:825-827 (in Dutch)
7. Black PM (1979) Selective treatment of infants with myelomeningocele. Neurosurgery 5:334-338
8. Bondi JD, Gries D, Faucette K (2006) Neonatal Euthanasia? Pediatrics 117(3):983
9. Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA (2001) Spina bifida outcome: A 25-year prospective. Pediatr Neurosurg 34:114-120
10. Bruner J, Tulipan N (2004) Tell the truth about spina bifida. Ultrasound Obstet Gynecol 24:595-596
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 47:27-34
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)
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 297:1230-1233
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) Levensbēindiging 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-S17
21. Feudtner C (2005) Control of suffering on the slippery slope of care. Lancet 365(9467):1284-1286
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 73:564-566
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 4:302-307
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 72:450-458
28. Hain RDW, Miser A, Devins M, Wallace WHB (2005) Strong opioids in pediatric palliative medicine. Pediatric Drugs 7(1):1-9
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)
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 22:117-124
32. Hunt GM, Oakeshott P (2003) Outcome in people with open spina bifida at age 35: Prospective community based cohort study. BMJ 326:1365-1366
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 75:1112-1118
34. 'The Right to be Different': http://www.ifglobal.org/pregnancy.asp?lang= 1&main=8&sub=3
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 32:157-158
37. Klotzko AJ (1997) What kind of life? What kind of death? An interview with Dr. Henk Prins. Bioethics 11:24-42
38. Kompanje EJO, de Jong THR, Arts WFM, Rotteveel JJ (2005) Problematische basis voor 'uitzichtloos en ondraaglijk lijden' als criterium voor actieve levensbeēindiging bij pasgeborenen met spina bifida. Ned Tijdschr Geneeskd 149(37):2067-2069 (in Dutch)
39. Laane HM (2005a) Actieve levensbeēindiging bij pasgeborenen in Nederland; analyse van alle 22 meldingen uit 1997/'04. Ned Tijdschr Geneeskd 149(20):1134 (in Dutch)
40. Laane HM (2005b) Actieve levensbeēindiging bij pasgeborenen in Nederland; analyse van alle 22 meldingen uit 1997/'04. Ned Tijdschr Geneeskd, 149(49):2733-2762 (in Dutch)
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 13:279-303
45. Manninen BA (2006a) A case for justified non-voluntary active euthanasia: Exploring the ethics of the Groningen Protocol. J Med Ethics 32:643-651
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):169-178
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 364:1885-1895
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 53:632-636
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 21:48-52
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 83:1384-1388
55. Pit-ten Cate IM, Kennedy C, Stevenson J (2002) Disability and quality of life in spina bifida and hydrocephalus. Dev Med Child Neurol 44:317-322
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):1125-1136
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)
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 160:364-368
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 20:279-304
63. Sawyer SM, Roberts KV (1999) Sexual and reproductive health in young people with spina bifida. Dev Med Child Neurol 41:671-675
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):277-287
68. Steinbok P, Irvine PB, Cochrane DD, Irwin BJ (1992) Long-term outcome and complications of children born with meningomyelocele. Child's Nerv Syst 8:92-96
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 19:286-291
71. UMCG (2004) Paediatricians call for nationwide protocol for the ending of life of unbearably and incureably suffering newborns. http://www.azg.nl/azg/nl/english/nieuws/45613?pathkey=6936
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)
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 116:736-739
76. Verhagen E, Sauer PJJ (2005d) The Groningen Protocol - euthanasia in severely ill newborns. New Engl J Med 352:959-962
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