How Much Weight Should We Give To Parental Interests In Decisions About Life Support For Newborn Infants?

Monash Bioethics Review

Volumn 29, Issue 2, 2010, Pages 16-40

  Wilkinson, Dominic ^a  

^a UNIVERSITY OF OXFORD   (United Kingdom)

Author keywords

Monash Bioethic Review; Newborn Infant; Parental Interest; Spinal Muscular Atrophy; Spinal Muscular Atrophy Type

Indexed keywords

ABORTION; ARTICLE; CHILD PARENT RELATION; CONFLICT OF INTEREST; CONGENITAL MYASTHENIC SYNDROME; ETHICS; FEMALE; HEREDITARY SPINAL MUSCULAR ATROPHY; HUMAN; HUMAN RELATION; INFANT; LEGAL ASPECT; LONG TERM CARE; MALE; NEWBORN; NEWBORN DISEASE; PARENTAL CONSENT; PREGNANCY; TREATMENT WITHDRAWAL; UNITED KINGDOM;

ABORTION, EUGENIC; CONFLICT OF INTEREST; FEMALE; GREAT BRITAIN; HUMANS; INFANT; INFANT, NEWBORN; INFANT, NEWBORN, DISEASES; LIFE SUPPORT CARE; MALE; MYASTHENIC SYNDROMES, CONGENITAL; PARENT-CHILD RELATIONS; PARENTAL CONSENT; PREGNANCY; PROFESSIONAL-FAMILY RELATIONS; SPINAL MUSCULAR ATROPHIES OF CHILDHOOD; WITHHOLDING TREATMENT;

MLCS; MLOWN;

EID: 84856394484     PISSN: 13212753     EISSN: 18366716     Source Type: Journal    
DOI: 10.1007/BF03351523     Document Type: Article

References (89)

1. An NHS Trust v MB 2006 2 F.L.R. 319.
2. Baby RB EWHC (Fam) 2009. Comments by Mr Justice McFarlane. Accessed 9 February 2010 Available at: www.bailii.org/cgi-bin/markup.cgi?doc=/ew/cases/EWHC/Fam/2009/3269.
3. American Academy of Pediatrics Committee on Fetus and Newborn 2007. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics 119: 401–3.
4. Bailey, T., Amann, M. 2010. Defining best interests. Edmonton Journal. Edmonton, Ca. Accessed 1 February 2010. Available at: http://www.edmontonjournal.com/news/Defining+best+interests/2476916/story.html.
5. Bain, K. J 1998. Children with severe disabilities: Options for residential care. Med J Aust 169: 598–600.
6. Bermudez, J. L 1996. The moral significance of birth. Ethics 106: 378–403. DOI: 10.1086/233622
7. Bermudez, J. L. 2001. Nonconceptual self-consciousness and cognitive science. Synthese 129: 129–149. DOI: 10.1023/A:1012603425585
8. Boonin, D. 2002. In Defense of Abortion. Cambridge: Cambridge University Press. DOI: 10.1017/CBO9780511610172
9. Bornstein, M; Arterberry, M; Mash, C. 2004. Long term memory for an emotional interpersonal interaction occurring at 5 months of age. Infancy 6: 407–16. DOI: 10.1207/s15327078in0603_6
10. Bourgeois, J.P. 2001 Synaptogenesis in the neocortex of the newborn: The ultimate frontier for individuation? In Handbook of Developmental Cognitive Neuroscience, edited by C. Nelson and M. Luciana. Cambridge, MA.: MIT Press.
11. Brinchmann, B. S 1999. When the home becomes a prison: Living with a severely disabled child. Nursing Ethics 6: 137–43. DOI: 10.1177/096973309900600206
12. British Medical Association ethics department 2004. Medical Ethics Today: The BMA’s Handbook of Ethics And Law. London: BMJ Books.
13. Broome, J. 2004. Weighing Lives. Oxford: Oxford University Press. DOI: 10.1093/019924376X.001.0001
14. Bush, A; Fraser, J; Jardine, E; Paton, J; Simonds, A; Wallis, C 2005. Respiratory management of the infant with type 1 spinal muscular atrophy. Arch Dis Child 90: 709–11. DOI: 10.1136/adc.2004.065961
15. Canadian television 2010. Couple sues Montreal Children’s Hospital. CTV Montreal. Montreal, Ca. Accessed 1 February 2010. Available at: http://montreal.ctv.ca/servlet/an/local/CTVNews/20090313/mtl_montreal_childrens_suit090313/20090313?hub=MontrealHome.
16. Canadian television company 2010. ‘Couple sues hospital for keeping sick baby alive.’ CTV accessed 27 January 2010. Available at: http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20090313/montreal_lawsuit_090313/20090313.
17. Castagna, C. 2010. Baby Isaiah dies in parents arms. Toronto Sun. Toronto. Accessed 15 March 2010. Available at: http://www.torontosun.com/news/canada/2010/03/11/13198176.html http://www.torontosun.com/news/canada/2010/03/ll/13198176.html.
18. Corman, H; Kaestner, R 1992. The effects of child health on marital status and family structure. Demography 29: 389–408. DOI: 10.2307/2061825
19. Cummins, R 2001. The subjective well-being of people caring for a family member with a severe disability at home: A review. J Intellect Dev Dis 26: 83–100. DOI: 10.1080/13668250020032787
20. Curran, A. L; Sharpies, P. M; White, C; Knapp, M 2001. Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Dev Med Child Neurol 43: 529–33. DOI: 10.1017/S0012162201000962
21. Dare, T 2009. Parental rights and medical decisions. Paediatric Anaesthesia 19: 947–52. DOI: 10.1111/j.1460-9592.2009.03094.x
22. Dawson, A 2005. The determination of the best interests in relation to childhood immunisation. Bioethics 19: 72–89. DOI: 10.1111/j.1467-8519.2005.00425.x
23. Day, E. 2009. Baby RB: Heartbreak in Court 50 as life of a one-year-old hangs in the balance. The Guardian. Accessed 11 November 2009. Available from: http://www.guardian.co.uk/society/2009/nov/08/baby-rb-court-case.
24. DeGrazia, D 1995. Value theory and the best interests standard. Bioethics 9: 50–61. DOI: 10.1111/j.1467-8519.1995.tb00300.x
25. Diekema, D. S 2004. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theor Med Bioeth 25: 243–64. DOI: 10.1007/s11017-004-3146-6
26. Diekema, D. S; Fost, N 2010. Ashley revisited: a response to the critics. Am J Bioeth 10: 30–44. DOI: 10.1080/15265160903469336
27. Downie, R. S;, R. S; Randall, F 1997. Parenting and the best interests of minors. J Med Philos 22: 219–31. DOI: 10.1093/jmp/22.3.219
28. Duff, R. S 1981. Counseling families and deciding care of severely defective children: A way of coping with ‘Medical Vietnam’. Pediatrics 67: 315–320.
29. Feinberg, J. 1984. The Moral Limits of The Criminal Law: Harm to Others. Oxford: Oxford University Press.
30. Fost, N 1981 Counseling families who have a child with a severe congenital anomaly. Pediatrics 67: 321–324.
31. Fost, N 1986. Treatment of seriously ill and handicapped newborns. Critical Care Clinics 2:145–159.
32. Gallagher, S 1996. The moral significance of primitive self-consciousness: A response to Bermudez. Ethics 107: 129–140. DOI: 10.1086/233699
33. Geevasinga, N; Ryan, M. M 2007. Physician attitudes towards ventilatory support for spinal muscular atrophy type 1 in Australasia. J Paediatr Child Health 43: 790–794. DOI: 10.1111/j.1440-1754.2007.01197.x
34. General Medical Council 2006. Withholding and withdrawing life-prolonging treatments: good practice in decision-making. London, GMC. Available at: www.gmc-uk.org/guidance/ethical_guidance/witholding_lifeprolonging_guidance.asp http://www.gmc-uk.org/guidance/ethical_guidance/witholding_lifeprolonging_guidance.asp.
35. Glass, J; Bengtson, V; Dunham, C 1986. Attitude similarity in three-generation families: Socialization, status inheritance or reciprocal influence? American Sociological Review 51: 685–698. DOI: 10.2307/2095493
36. Griffin, J. 1986. Weil-Being: Its Meaning, Measurement and Moral Importance. Oxford: Clarendon.
37. Hardart, M. K.; Burns, J. P.; Truog, R. D. 2002. Respiratory support in spinal muscular atrophy type I: A survey of physician practices and attitudes. Pediatrics 110: e24. DOI: 10.1542/peds.110.2.e24
38. Hardart, G. E; Truog, R. D 2003a. Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients. Crit Care Med 31: 1895–1900. DOI: 10.1097/01.ccm.0000084805.15352.01
39. Hardart, M. K; Truog, R. D 2003b. Spinal muscular atrophy — type I. Arch Dis Child 88: 848–850. DOI: 10.1136/adc.88.10.848
40. Harrison, H 2008. The offer they can’t refuse: Parents and perinatal treatment decisions. Semin Fetal Neonatal Med 13: 329–334. DOI: 10.1016/j.siny.2008.03.004
41. Hartshorn, K 2003. Reinstatement maintains a memory in human infants for 1(1/2) years. Developmental Psychobiology 42: 269–282. DOI: 10.1002/dev.10100
42. Hayne, H 2004. Infant memory development: Implications for childhood amnesia. Dev Rev 24: 33–73. DOI: 10.1016/j.dr.2003.09.007
43. Hollander, J. 2008. When the Bough Breaks: A Mother’s Tale. London: John Murray.
44. International Planned Parenthood Federation 2008 Abortion Legislation in Europe (Updated January 2009). Brussels, IPPF European Network. Accessed 18 October 2010. Available at: http://www.ippfen.org/en/Resources/Publications/Abortion+Legislation+in+Europe.htm.
45. Inwald, D 2008. The best interests test at the end of life on PICU: A plea for a family centred approach. Arch Dis Child 93: 248–250. DOI: 10.1136/adc.2006.111120
46. Janvier, A; Bauer, K. L; Lantos, J. D 2007. Are newborns morally different from older children? Theor Med Bioeth 28: 413–425. DOI: 10.1007/s11017-007-9052-y
47. Janvier, A; Leblanc, I; Barrington, K. J 2008a. Nobody likes premies: The relative value of patients’ lives. J Perinatol 28: 821–826. DOI: 10.1038/jp.2008.103
48. Janvier, A; Leblanc, I; Barrington, K. J 2008b. The best-interest standard is not applied for neonatal resuscitation decisions. Pediatrics 121: 963–969. DOI: 10.1542/peds.2007-1520
49. Kaposy, C 2007. Can infants have interests in continued life? Theor Med Bioeth 28: 301–330. DOI: 10.1007/s11017-007-9044-y
50. Kipnis, K; Williamson, G. M 1984. Nontreatment decisions for severely compromised newborns. Ethics 95: 90–111. DOI: 10.1086/292603
51. Kopelman, L. M; Kopelman, A. E Using a new analysis of the best interests standard to address cultural disputes: Whose data, which values? Theor Med Bioeth 28: 373–391.
52. Kuhse, H.; Singer, P. 1985. Should the Baby Live? The Problem of Handicapped Infants. Oxford: Oxford University Press.
53. Lagercrantz, H; Changeux, J. P 2009. The emergence of human consciousness: From fetal to neonatal life. Pediatric Research 65: 255–260. DOI: 10.1203/PDR.0b013e3181973b0d
54. Leonard, B; Brust, J. D; Sapienza, J. J 1992. Financial and time costs to parents of severely disabled children. Public Health Rep 107: 302–312.
55. Local Government Association 2001. Memorandum submitted by the Local Government Association. Adoption and Children Bill. in Select Committee on Adoption and Children Bill Ed.). Accessed 1 February 2010. Available at: http://www.publications.parliament.uk/pa/cm200001/cmselect/cmadopt/431/1050108.htm.
56. Martin, G; Clark, R 1982. Distress crying in neonates: Species and peer specificity. Dev Psychol 18: 3–9. DOI: 10.1037/0012-1649.18.1.3
57. McMahan, J 1988. Death and the value of life. Ethics 99: 32–61. DOI: 10.1086/293034
58. McMahan, J. 2002. The Ethics of Killing: Problems at the Margins of Life. New York: Oxford University Press. DOI: 10.1093/0195079981.001.0001
59. Meltzoff, A. N; Moore, M. K 1977. Imitation of facial and manual gestures by human neonates. Science 198: 74–78. DOI: 10.1126/science.897687
60. Meltzoff, A. N; Moore, M. K 1983. Newborn infants imitate adult facial gestures. Child Development 54: 702–709. DOI: 10.2307/1130058
61. Meltzoff, A. N; Moore, M. K. 1994. Imitation, memory and the representation of persons. Infant Behav Dev 17: 83–99. DOI: 10.1016/0163-6383(94)90024-8
62. Murphy, N. A; Christian, B; Caplin, D. A; Young, P. C 2007. The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev 33: 180–187. DOI: 10.1111/j.1365-2214.2006.00644.x
63. Nuffield Council on Bioethics 2006. Critical Care Decisions in Fetal and Neonatal Medicine: Ethical Issues. London: Nuffield Council on Bioethics.
64. Olsson, M. B; Hwang, C. P 2001. Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res 45: 535–543. DOI: 10.1046/j.1365-2788.2001.00372.x
65. Parfit, D. 1984. Reasons and Persons. Oxford: Oxford University Press.
66. Paris, J. J; Schreiber, M. D 1996. Parental discretion in refusal of treatment for newborns. A real but limited right. Clinics in Perinatology 23: 573–581.
67. Priest, L. 2010. The two faces of a life or death dilemma. The Globe and Mail. Toronto, Canada. Accessed 2 January 2010. Available at: http://www.theglobeandmail.com/news/national/the-two-faces-of-a-life-or-death-dilemma/articlel445507/.
68. Raina, P.; O’Donnell, M.; Rosenbaum, P.; Brehaut, J.; Walter, S. D.; Russell, D.; et al. 2005. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 115: e626–636. DOI: 10.1542/peds.2004-1689
69. Reichman, N. E; Corman, H; Noonan, K 2004. Effects of child health on parents’ relationship status. Demography 41: 569–584. DOI: 10.1353/dem.2004.0026
70. Reichman, N. E; Corman, H; Noonan, K 2008. Impact of child disability on the family. Matern Child Health J 12: 679–683. DOI: 10.1007/s10995-007-0307-z
71. Ross, L. F 2007. The moral status of the newborn and its implications for medical decision making. Theor Med Bioeth 28: 349–355. DOI: 10.1007/s11017-007-9045-x
72. Royal College of Paediatrics and Child Health. 2004. Withholding and Withdrawing Life-Saving Treatment in Children: A Framework for Practice. London: Royal College of Paediatrics and Child Health.
73. Ryan, M. M; Kilham, H; Jacobe, S; Tobin, B; Isaacs, D 2007. Spinal muscular atrophy type 1: Is long-term mechanical ventilation ethical? J Paediatr Child Health 43: 237–242. DOI: 10.1111/j.1440-1754.2007.01052.x
74. Sakakihara, Y; Kubota, M; Kim, S; Oka, A 2000. Long-term ventilator support in patients with Werdnig-Hoffmann disease. Pediatr Int 42: 359–363. DOI: 10.1046/j.1442-200x.2000.01241.x
75. Schoeman 1985. Parental discretion and children’s rights: Background and implications for medical decision-making. J Med Philos 10: 45–61. DOI: 10.1093/jmp/10.1.45
76. Singer, P. 1993. Practical Ethics. Cambridge: Cambridge University Press.
77. Singh, J; Lantos, J; Meadow, W 2004. End-of-life after birth: Death and dying in a neonatal intensive care unit. Pediatrics 114: 1620–1626. DOI: 10.1542/peds.2004-0447
78. Strong, C 1984. The neonatologist’s duty to patient and parents. Hastings Cent Rep 14: 10–16. DOI: 10.2307/3561159
79. Taddio, A; Goldbach, M; Ipp, M; Stevens, B; Koren, G 1995. Effect of neonatal circumcision on pain responses during vaccination in boys. Lancet 345, 291–292. DOI: 10.1016/S0140-6736(95)90278-3
80. The Current 2010. Montreal couple suing hospital. CBC. Toronto, Canada. Accessed 1 February 2010. Available at: http://www.cbc.ca/thecurrent/2009/200903/20090318.html.
81. Thomson, J 1971. A defense of abortion. Philos Public Aff 1: 47–66.
82. Thyen, U; Kuhlthau, K; Perrin, J. M 1999. Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics 103: 1235–1242. DOI: 10.1542/peds.103.6.1235
83. Veatch, R. M 1995. Abandoning informed consent. Hastings Cent Rep 25: 5–12. DOI: 10.2307/3562859
84. Verhagen, A.; Dorscheidt, J.; Engels, B.; Hubben, J.; Sauer, P. 2009. End-of-life decisions in Dutch neonatal intensive care units. Arch Pediatr Adolesc Med 163: 895–901. DOI: 10.1001/archpediatrics.2009.166
85. Wilkinson, D 2006. Is it in the best interests of an intellectually disabled infant to die? J Med Ethics 32: 45–09. DOI: 10.1136/jme.2005.013508
86. Wilkinson, D. 2010a. A life worth giving: The threshold for permissible withdrawal of treatment from disabled newborn infants. Am J Bioeth (forthcoming).
87. Wilkinson, D 2010b. ‘We don’t have a crystal ball’: neonatologists views on prognosis and decision-making in newborn infants with birth asphyxia. Monash Bioethics Review 29(1): 5.1–5.19. DOI: 10.1007/BF03351321
88. Wilkinson, D. J.; Fitzsimons, J. J.; Dargaville, P. A.; Campbell, N. T.; Loughnan, P. M.; McDougall, P. N.; et al. 2006. Death in the neonatal intensive care unit: Changing patterns of end of life care over two decades. Arch Dis Child Fetal Neonatal Ed 91: F268–71. DOI: 10.1136/adc.2005.074971
89. Wyn, N. 2007. Blue Sky July. Bridgend: Seren.