Research Article| Volume 2, ISSUE 1, P149-159, January 1986

Treatment of Seriously Ill and Handicapped Newborns

  • Norman Fost
    Corresponding author: Department of Pediatrics, University of Wisconsin School of Medicine, Madison, Wisconsin 53792
    Professor, Department of Pediatrics and Program in Medical Ethics, University of Wisconsin School of Medicine, Madison, Wisconsin
    Search for articles by this author
      This paper is only available as a PDF. To read, Please Download here.
      Medical technology makes it increasingly possible to prolong life, sometimes indefinitely in the face of overwhelming disability or suffering; thus, choices must be made whether to withhold or withdraw life-sustaining treatment. Reasonable people disagree about who should make such decisions when the patient is an infant, and what principles or rules should guide them. The article briefly reviews the recent history of this controversy, analyzes the major ethical substantive principles that have been proposed to guide conduct, and presents the arguments for a procedural approach that is now attracting interest.
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribers receive full online access to your subscription and archive of back issues up to and including 2002.

      Content published before 2002 is available via pay-per-view purchase only.


      Subscribe to Critical Care Clinics
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


      1. American Academy of Pediatrics, Committee on Bioethics: Treatment of critically ill newborns.
        Pediatrics. 1983; 72: 565-566
      2. American Academy of Pediatrics, National Association of Children's Hospitals and Related Institutions, and Children's Hospital National Medical Center v. Heckler.
        Civil Action #83-0774, U.S. Dist. Ct. for D.C., Apr. 1983; 14
      3. American Academy of Pediatrics, National Association of Children's Hospitals and Related Institutions, and Children's Hospital National Medical Center v. Heckler.
        Pediatrics. 1984; 74: 306-310
      4. American Hospital Association v.
        Heckler, 585 F Supp. 541, South Dist. N.Y. 1984;
        • Annas G.J.
        Denying the rights of the retarded: The Philip Becker case.
        Hastings Cent. Rep. 1979; 9: 18
      5. Child Abuse Amendments of 1984, Public Law 98-457, amending Child Abuse Prevention and Treatment Act, 45 CFR 1340.15

        • Culhton B.
        An attempt to regulate medical decision making.
        Clin. Res. 1983; 31: 434-438
        • Dotson B.L.
        Office for Civil Rights, U.S. Department of Health and Human Services: Notice to Health Care Providers, May 18, 1982.
        Printed in 47 Fed. Reg. 1982; 16 (26027, June)
        • Doudera A.E.
        • Cranford R.E.
        Institutional Ethics Committees and Healthcare Decision Making. Health Administration Press, Ann Arbor1985
        • Duff R.
        • Campbell A.G.M.
        Moral and ethical dilemmas in the special care nursery.
        N. Engl. J. Med. 1973; 289: 890-894
        • Duff R.
        Counseling families and deciding care of severely defective newborns: A way of coping with medical Vietnam.' Pediatrics. 1981; 67: 315-320
        • Firth R.
        Ediical absolutism and the ideal observer.
        Philos. Phenom. Res. 1952; 12: 317
        • Fost N.
        Counseling families who have a child with a congenital anomaly.
        Pediatrics. 1981; 67: 321-324
        • Fost N.
        Ethical issues in the treatment of critically ill newborns.
        Pediatr. Ann. 1981; 10: 383-389
        • Fost N.
        Putting hospitals on notice.
        Hastings Cent. Rep. 1982; 12: 5-8
      6. Fost, N., and Cranford, R.: Hospital ethics committees: Administrative aspects. J.A.M.A., in press.

        • Freeman J.
        Early management and decision-making for the treatment of myelomeningocele: A critique.
        Pediatrics. 1984; 73: 564-566
        • Gallo A.
        Spina bifida: The state of the art of medical management.
        Hastings Cent. Rep. 1984; 14: 10-13
        • Gross R.H.
        • et al.
        Early management and decision-making for the treatment of myelomeningocele.
        Pediatrics. 1983; 72: 450-458
        • Gustafson J.
        Mongolism, parental desires, and the right to life.
        Persp. Biol. Med. 1973; 16: 529-557
      7. In re Quinlan. 70 N.J. 10, 355 A.2nd. 1976; 647
        • Langer W.L.
        Infanticide: A historical survey.
        Hist. Childhood Q. 1974; 1: 353-388
        • Lorber J.
        Results of treatment of myelomeningocele: Analysis of 524 unselected cases with special reference to possible selection for treatment.
        Dev. Med. Child Neurol. 1971; 13: 279
      8. Nondiscrimination on the basis of handicap.
        48 Fed. Reg. 9630. 1983; 7 (Mar)
      9. Nondiscrimination on the basis of handicap relating to healthcare for handicapped infants.
        48 Fed. Reg. 1983; (July 5): 30846-30852
      10. Nondiscrimination on the basis of handicap: Procedure and guidelines relating to health care for handicapped infants.
        49 Fed. Reg. 1984; : 1622-1654
      11. Office of Human Development Services. U.S. Department of Health and Human Services: Child abuse and neglect-prevention and treatment program: Notice of proposed rulemaking.
        49 Fed. Reg. 1984; : 48160-48173
      12. Parents sentenced after babv dies with no medical treatment.
        Am. Med. News. 1984; 9 (Nov): 29
      13. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research: Deciding to Forego Life-Sustaining Treatment. U.S. Government Printing Office, Washington, C1983
        • Robertson J.A.
        Involuntary euthanasia of defective newborns: A legal analysis.
        Stanford Law Rev. 1975; 27: 213
        • Robertson J.A.
        • Fost N.
        Passive euthanasia of defective newborns: Legal considerations.
        J. Pediatr. 1976; 88: 883-889
        • Shaw A.
        • Randolph J.G.
        • Manard B.
        Ethical issues in pediatric surgery: A nationwide survey of pediatricians and pediatric surgeons.
        Pediatrics. 1977; 60: 588-599
        • Shurtleff D.B.
        Myelodysplasia: Management and treatment.
        Curr. Prob. Pediatr. 1980; 10: 1-98
        • Solnit A.J.
        • Stark M.H.
        Mourning and the birth of a defective child.
        Psvchoanal. Study Child. 1961; 15: 523
      14. Sophocles: Oedepus Rex. Transl.
        in: Fitzgerald D. Fitts R. Harvest Books/Harcourt, Brace, New York1939
        • Steinbock B.
        Baby Jane Doe in the courts.
        Hastings Cent. Rep. 1984; 14: 13-19
        • Todres I.D.
        • et al.
        Pediatricians' attitudes affecting decision making in defective newborns.
        Pediatrics. 1977; 60: 197-201
        • Wald M.
        State intervention on behalf of neglected children: Standards for removal of children from their homes, monitoring the status of children in foster care, and termination of parental rights.
        Stanford Law Rev. 1976; 28: 625-706
      15. Who Should Survive? Documentary film distributed by Lowengard and Rrotherhood, Hartford

        • Will G.W.
        The killing will not stop.
        The Washington Post. Apr. 1982; 19