The Relevance of Benefit: Competing Notions of What Justice Requires 1
One m ight have to think back as far as 1968 and the shootings of Martin Luther King and Robert Kennedy to find a death which so gained the attention and ire of the nation as that of a nameless male infant in Bloomington, I ndiana. The child died April 15, 1982 as a result of a decision by parents and phys ician not to remove an obstruction in his esophagus blocking food from entering his stomach. Although the blockage could have been corrected by relatively simple surgery, the procedure was not performed because the infant was believed afflicted with Down's syndrome. The child lived six days without food or Ouids, and died before an appeal could reach the United States Supreme Court. alleging that the refusal of treatment represented a denia P of the infant's constitutional right of due process. The evidence indicated that the infant almost certainly did have Down's syndrome. But chromosome studies , the only means of being absolutely certa in of the diagnosis, were not done. Apparently in response to the controversy surrounding this infant's death, the Office for Civil Rights of the Department of Health and Human Services (H H S) issued May 18, 1982 a "N otice to Health Care Providers." The "Notice" warned that it was a violation of Section 504 of the Rehabilitation Act of 1973 to withhold food or medical treatment from a handicapped in fant if "( I) the withholding is based on the fact that the infant is handicapped; and (2) the handicap does not render the treatment or nutritional sustenance medically contraindicated." The relevant part of Section 504 states that "no otherwise qualified handicapped individual .... shall, solely by reason of his handicap, be excluded from participation in, be denied the benefits of, or be su bjected to discrimination under any program or activity receiving federal financial assistance." The "Notice"