Abstract
What follows is, for the most part, a recapitulation of a personal philosophical voyage, launched as a result of a single patient encounter more than 10 years before the birth of the famous Baby Doe in 1982. In 1970, as Chief of Pediatric Surgery at the University of Virginia Medical Center, I was called to see a newborn baby with esophageal atresia who also had Down syndrome. As the parents signed the consent form, they asked, “Do we have a choice?” I did not respond on the assumption that no response was expected. The baby did well postoperatively, was placed three weeks later in a state institution for the retarded, the usual practice in those days, and six months later died of complications of institutional neglect. The question the parents asked only subsequently struck me as more than rhetorical and led me to pursue this question in an article that was published by the New York Times Magazine in January of 1972 (Shaw, 1972).
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References
American Academy of Pediatrics (1984) Joint policy statement. Prin-ciples of treatment of disabled infants. Pediatrics 73, 559,560.
Bartling V. Glendale Adventists Medical Center,184 Cal App. 3d 961, 228 Cal Rpts. 360 (Ct. App. 1986).
Bowen V. American Hospital Assn.,476 U.S. 610 (1986).
Caniano, D. A. and Kanoti, G. A. (1988) Newborns with massive intestinal loss: Difficult choices. N. Engl. J. Med. 318, 703–707.
Child Abuse Amendments of 1984. Pub L. 98–457.
Crain, L. S., Mangravite, D. N., Allport, R., Schour, M., and Biakanja, K. (1990) Health care needs and services for technology—dependent children in developmental centers. West. J. Med. 152, 434–438.
Crane, D. (1979) “Decisions to Treat Critically Ill Patients” inThe Sanctity of Social Life (Transaction Books, New Brunswick, NJ), pp. 35–65.
Duff, R. S. and Campbell, A. G. M. (1973) Moral and ethical dilem-mas in the special care nursery. N. Engl. J. Med. 289, 890–894.
Federal Register. July 5, 1983 Part III. Department of Health and Human Services. Nondiscrimination on the Basis of Hardships Relating to Health Care for Handicapped Infants; Proposed Rules. 48, 30846–30852.
Federal Register. April 15, 1985 Part VI. Department of Health and Human Services Part VI. Services and Treatment for Disabled Infants. Infant Care Review Committee Model Guidelines 50, 14893–14901.
Fleming, G. V., Hudd, S. S., LeBailly, S. A., and Greenstine, R. M. (1990) Infant care review committees. The response to federal guidelines. Am. J. Dis. Child. 144, 778–781.
Fletcher, J. (1960) Morals and Medicine (Beacon Press, Boston, MA).
Gross, R., Cox, A., and Tatyrek, R. (1983) Early management and discussion making for the treatment of myelomeningocele. Pediat-rics 72, 450–458.
Hentoff, N. (1984) They’re putting babies on death row in Oklahoma. The Village Voice, 8, May 1, 1984.
In re Dinnerstein, 6 Mass. App. Ct. 466, 380 N.E. 2d 134 (1978).
In re Quinlan, 70 N.J. 10, 355 A. 2d 647 (1976).
In re Spring, 380 Mass. 629, 4065 N.E. 2d 115 (1980).
Kopelman, L. M., Irons, T. G., and Kopelman, A. E. (1988) Neonatologists judge the “Baby Doe” regulations. N. Engl. J. Med. 318, 677–683.
Maine Medical Center and Martin A. Barron, Jr., M.D. v. Lorraine Marie Houle and Robert B. T. Houle. State of Maine Superior Court Civil Action Docket No. 74–145 (1974).
McLaughlin, J. F., Shurtleff, D. B., Lamers, J., Stuntz, J. T., Hayden, P., and Kropp, R. J. (1985) Influence of prognosis on decisions regarding treatment of infants with myelodysplasia. N. Engl. J. Med. 312,1589–1594.
Newman, S. (1989) Baby Doe, Congress and the states: Challenging the Federal Treatment Standards. American Journal of Law and Medicine 15,1–60.
Nolan, K. (1990) Let’s Take Baby Doe to Alaska. Hastings Cent, Rep. 20, 3.
President’s Commission for the Study of Ethical Probelms in Medicine and Biomedical and Behavioral Research (1983) Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical and Legal Issues in Treatment Decisions. GPO, Washington, DC, Rehabilitation Act of 1973, 504, 29 USC. 794 (1982).
Ramsey, P. (1970) The Patient as Person (Yale University Press, New Haven, CT).
Robertson, J. (1975) Involuntary euthanasia of defective newborns: A legal analysis. Stanford Law Rev. 27, 213–269.
Robertson, J. A. (1981) Dilemma in Danville. Hastings Cent. Rep. 11,5–8.
Superintendant of Belchertown State School v. Saikewicz, Mass. 370 N.E. 2d 417 (1977).
Schaeffer, F. A. and Koop, C. E. (1979) Whatever Happened to the Human Race? (Fleming H. Revell Co., Old Tappan, NJ).
Shaw, A. (1972) Doctor, do we have a choice? New York Times Magazine, pp. 44–54.
Shaw, A. (1973) Dilemma’s of “informed consent” in children. N. Engl. J. Med. 289, 885–890.
Shaw, A. (1977) Defining quality of life: A formula without numbers. Hastings Cent. Rep. 7, 11.
Shaw, A. (1978) The ethics of proxy consent, in Decision Making and the Defective Newborn (Swinyard, C. A., ed.), Charles C. Thomas, Springfield, IL, pp. 589–597.
Shaw, A. (1988) QL Revisited. Hastings Cent. RepNJ 18,10.
Shaw, A., Randolph, J. G., and Manard, B. (1977) Ethical issues in pediatric surgery: a national survey of pediatricians and pediatric surgeons. Pediatrics 60, 588–599.
Shurtleff, D. B., Hayden, P. W., Loesser, J. D., and Kronmall, R. A. (1974) Myelodysplasia: Decision for death or disability. N. Engl. J. Med. 291,1005–1011.
Todres, I. D., Guillemin, J., Grodin, M. A., and Batten, D. (1988) Lifesaving therapy for newborns: A questionnaire survey in the state of Massachusetts. Pediatrics 81, 643–649.
Todres, I. D., Krane, D., and Howell, M. C., et al. (1977) Pediatricians’ attitudes affecting decision making in defective newborns. Pediatrics 60, 197–201.
US Commission on Civil Rights (1989) Medical Discrimination Against Children with Disabilities. Washington, DC 20425, p. 366.
Van Dyke, D. C. and Allen, M. (1990) Clinical management consider-ations in long-term survivors. Pediatrics 85, 753–759.
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Shaw, A. (1992). Baby Doe and Me. In: Caplan, A.L., Blank, R.H., Merrick, J.C. (eds) Compelled Compassion. Contemporary Issues in Biomedicine, Ethics, and Society. Humana Press, Totowa, NJ. https://doi.org/10.1007/978-1-4612-0409-1_7
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DOI: https://doi.org/10.1007/978-1-4612-0409-1_7
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