How Much Weight Should We Give To Parental Interests In Decisions About Life Support For Newborn Infants?
Life-sustaining treatment is sometimes withdrawn or withheld from critically ill newborn infants with poor prognosis. Guidelines relating to such decisions place emphasis on the best interests of the infant. However, in practice, parental views and parental interests are often taken into consideration.
In this paper I draw on the example of newborn infants with severe muscle weakness (for example spinal muscular atrophy). I provide two arguments that parental interests should be given some weight in decisions about treatment, and that they should be given somewhat more weight in decisions about newborns than for older children. Firstly, the interests of the infant and of parents intersect, and are hard to separate. Parents’ views about treatment may be relevant to an assessment of the infant’s interests, and they may also affect those interests. Secondly, the interests of the infant in her future are relatively reduced by her developmental immaturity. In some situations parents’ welfare interests outweigh those of the infant. However, I argue that this would not justify treatment limitation except in the setting of severe impairment.
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- An NHS Trust v MB 2006 2 F.L.R. 319.Google Scholar
- 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.
- American Academy of Pediatrics Committee on Fetus and Newborn 2007. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics 119: 401–3.Google Scholar
- 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.
- Bain, K. J 1998. Children with severe disabilities: Options for residential care. Med J Aust 169: 598–600.Google Scholar
- 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.Google Scholar
- British Medical Association ethics department 2004. Medical Ethics Today: The BMA’s Handbook of Ethics And Law. London: BMJ Books.Google Scholar
- 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.
- 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.
- 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.
- 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.
- Duff, R. S 1981. Counseling families and deciding care of severely defective children: A way of coping with ‘Medical Vietnam’. Pediatrics 67: 315–320.Google Scholar
- Feinberg, J. 1984. The Moral Limits of The Criminal Law: Harm to Others. Oxford: Oxford University Press.Google Scholar
- Fost, N 1981 Counseling families who have a child with a severe congenital anomaly. Pediatrics 67: 321–324.Google Scholar
- Fost, N 1986. Treatment of seriously ill and handicapped newborns. Critical Care Clinics 2:145–159.Google Scholar
- 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.
- Griffin, J. 1986. Weil-Being: Its Meaning, Measurement and Moral Importance. Oxford: Clarendon.Google Scholar
- Hollander, J. 2008. When the Bough Breaks: A Mother’s Tale. London: John Murray.Google Scholar
- 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.
- 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.Google Scholar
- Kuhse, H.; Singer, P. 1985. Should the Baby Live? The Problem of Handicapped Infants. Oxford: Oxford University Press.Google Scholar
- 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.Google Scholar
- 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.
- Nuffield Council on Bioethics 2006. Critical Care Decisions in Fetal and Neonatal Medicine: Ethical Issues. London: Nuffield Council on Bioethics.Google Scholar
- Parfit, D. 1984. Reasons and Persons. Oxford: Oxford University Press.Google Scholar
- 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.Google Scholar
- 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/.
- 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.Google Scholar
- Singer, P. 1993. Practical Ethics. Cambridge: Cambridge University Press.Google Scholar
- 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.
- Thomson, J 1971. A defense of abortion. Philos Public Aff 1: 47–66.Google Scholar
- Wilkinson, D. 2010a. A life worth giving: The threshold for permissible withdrawal of treatment from disabled newborn infants. Am J Bioeth (forthcoming).Google Scholar
- Wyn, N. 2007. Blue Sky July. Bridgend: Seren.Google Scholar