Federal policy on forgoing treatment or care: contradictions or consistency?

Attempting to discuss federal policy in almost any area of law is a tricky business at best. However, when the area is as controversial and eclectic as forgoing or withholding medical care, discerning federal policy, as though there is a single such policy, can be frustrating unto despair. Which policy represents the federal policy? That embodied in the statutes enacted by Congress, the presumptive policymakers? Or is it that embodied in the administrative regulations, where often the tail wags the dog? Or is it in presidential pronouncements or executive orders, or in executive decisions to intervene in litigation? Or is the federal policy that which emerges at the far end of federal litigation in judicial opinions that long ago abandoned any pretense of construing rather than making law? Or is it in something as nuanced as the degree of enforcement of federal law at the "street level," so to speak? The most elaborate and protective policy imaginable hardly bespeaks true commitment if the enforcers engage in benign neglect when the law is violated. These complications are compounded in an area such as forgoing or withholding medical treatment because each branch of the federal system, as well as each level of the bureaucracy, can have a vastly different view of what "the policy" should be, and each position can be asserted with equal vigor and intensity. Therefore, to embark on a journey through federal policy, one should keep these matters in mind and be prepared for an uncertain and perilous trek that may not lead to a single destination. Further confusion results from the relative "newness" of the issue. In the history of American law, these death and dying medical treatment issues are fledglings still seeking their wings. Any seminal legal issue, much less one so controversial and dramatic, needs time to develop even a semblance of consistency and predictability. Having said all of this, attention should be turned to those touchstones of federal policy that are most likely to put us on the road toward discerning federal policy in this area. Specifically, attention should focus on Congress and the courts. Section 504 of the Rehabilitation Act Section 504 of the Rehabilitation Act of 1973(1) is a good example not only of federal policy, but of the pulling and tugging that creates confusion and uncertainty. A simple reading of section 504 of the act bespeaks one very clear and consistent policy: no discrimination based upon a handicap: No otherwise qualified individual with handicaps in the United States... shall, solely by reason of her or his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United Postal Service.... Even without mention of medical care/treatment decisions, the broad sweep of the all-encompassing language confirms the wisdom and rationality of those who sought to use section 504 to protect handicapped individuals faced with denial or withdrawal of medical care/treatment based upon their handicapped status. The earliest, and seemingly most logical, use of section 504 in this instance was to protect handicapped newborns whose handicaps prompted decisions that assured their deaths from medical neglect. It seems that a clear federal policy to protect such infants could be inferred from section 504, especially in a society that once heard the Supreme Court uphold compulsory sterilization of the "socially inadequate." Why would section 504 not be directed toward creating a completely new attitude toward people with disabilities? Consequently, in 1982 it made perfect sense to see section 504 being urged on behalf of "Baby Doe" in Bloomington, Indiana. Baby Doe was born with a surgically correctable esophageal blockage that prevented oral feeding. …