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

• Author: Uddo, Basile J.

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. Seemingly irrelevant, Baby Doe was also born with Down syndrome. Yet, the Down syndrome would prove to be the critical factor in what was done, or rather not done, to correct the blockage.

The attending obstetrician, whom the record shows took a very dim view of Down syndrome children, opposed the pediatrician's recommendation of surgery to allow normal feeding. The OB recommended that nothing be done for Baby Doe, including making any attempt to provide nutrition and hydration. In other words, he recommended that Baby Doe be allowed to starve and dehydrate to death. The parents accepted this advice and refused to allow any assistance to the infant.

Predictably, some of the nurses that would have to preside over this slow death objected and sought court intervention, which was denied. Before the case could be brought before the United States Supreme Court and a pending adoption could be arranged, Baby Doe died.

The public and congressional reaction to the saga of Baby Doe in Bloomington prompted another level of federal policy to activate. President Reagan directed the Secretary of Health and Human Services (HHS) to notify health care providers that section 504 applied to Baby Doe situations.

This executive action necessarily activated yet another level of federal policy in the form of HHS regulations attempting to implement the presidential directive. What followed was too complicated and tortured for purposes of this discussion, but the high points are worth noting.

The first regulations promulgated by HHS were struck down as "arbitrary and capricious" by yet another actor in the federal policy mix--Federal Judge Gerhard Gesell. This sent HHS back to the drawing board to create a second version of the regulations, now focused on the required notice and procedures for handling Baby Doe cases. During the required public comment period 97.5 % of the 16,331 comments received were supportive of the regulations, while hospital and physician groups continued to denounce the entire undertaking. Subsequently, final compromise regulations were adopted in January 1984.

It would seem at this point that a clear federal policy had been established. A congressional statute coupled with a reasonable executive mandate to enforce it, along with a diligently developed set of negotiated and compromised administrative regulations, revised in response to a federal judge's ruling. That should do it! Not according to federal judicial policy.

The U.S. Second Circuit Court of Appeals had its say in American Hospital Association v. Heckler, in which it affirmed the district court's rejection of the regulations as being without statutory authority pursuant to its earlier opinion in United States v. University Hospital, State University. In University Hospital, the court had concluded that Baby Jane Doe qualified as a "handicapped individual." However, the court also found several reasons why section 504 could not prevent the medical neglect of a handicapped newborn.

The court held that the "otherwise...