Mongolism, Parental Desires, and the Right to Life

Human Rights and Equal Opportunities for People with Mental Handicap‐‐With Particular Reference to Down Syndrome

“…However, even so-called reasonably civilised societies interpret the worth of persons with mental retardation differently from the very moment of conception, especially if it can be foreseen that there is some expected genetic difference. It has been argued that the quality of life for infants with a severe and profound, even moderate degree of handicap is certain to be poor (Gustafson, 1973). Poor by whose standards?…”

The History of Ethical Decision Making in Neonatal Intensive Care

“…Furthermore, defining a life as worthy of saving based on solely 1 factor, intelligence in this case, oversimplified the concept of humanity. 3 The symposium and film received considerable attention in the press and precipitated a debate in the literature on the 2 questions we posed at the outset of this article.…”

“…These hallmarks of humanity went on to serve as points of contention as the ethical community continued to debate the changes in neonatal care. 8 In October 1973, the New England Journal of Medicine published a trio of landmark articles by physicians that addressed Lorber, 4 Shurtleff, 15 McCormick, 13 Gustafson, 3 [4][5][6][7] Comfort Care Defined as routine measures not intended to prolong life. Duff and Campbell, 9 Gustafson, 3 Lorber 4 Long-term burdens Alluded to by many authors, but never defined, or quantitated.…”

“…We also no longer use terms such as ''mongolism'' and instead use ''trisomy 21'' or ''Down syndrome.'' 3,6,9,13 One possible explanation for this nomenclature is that the high mortality rates at that time, as described by Duff and Campbell (nearly 15% with an average of 2-3 deaths per week from an average daily census of 26), may have led to a negative bias, especially on the part of the physicians. 9 The acceptance of social conventions that we now would find antiquated is also found throughout the literature.…”

Standards, Norms, and Guidelines for Permissible Withdrawal of Life Support From Seriously Compromised Newborns

“…The pendulum has swung wildly from the position articulated in the infamous 1963 Johns Hopkins case (Gustafson 1973) that parents alone may determine the level of treatment (including, as in that case, the decision to leave a newborn with Down syndrome and surgically correctable duodenal atresia untreated and unfed over a 15-day period until the infant starved to death) to the ruling of Judge David Roberts in Maine Medical Center v. Houle (1974) that physicians must act to save the life of every newborn-even over the vehement objections of the parents. Richard McCormick (1974), in a now classic Journal of the American Medical Association article entitled "To Save or Let Die," wrote a pointed critique of the position taken by the court in the Houle case.…”