Medical discrimination against children with disabilities: a report of the U.S. Commission on Civil Rights.

• Author: Shapiro, Robyn S.

In September of 1989, following a four year study, at a cost of one-half million dollars, the United States Commission on Civil Rights issued the final draft of its report entitled "Medical Discrimination Against Children with Disabilities."(1) The commission's aim was to "determine the nature and extent of the practice of withholding medical treatment or nourishment from handicapped infants and to examine the appropriate role for the Federal Government."(2) The commission's overall general finding was that "discriminatory denial of medical treatment, food, and fluids is and has been a significant civil rights problem for infants with disabilities."(3) Nonetheless, one cannot help but suspect that this conclusion is distorted because of (a) the commission's flawed data acquisition process, (b) the commission's inaccurate and misguiding assumptions about medical care of infants with disabilities, (c) the commission's inaccurate and misguiding assumptions about applicable law, and (d) the commission's naive and complete failure to consider the implications for the care of infants with disabilities if its recommendations were to be aggressively followed.

The Process of Data Acquisition

When the final draft of the commission's report was first presented in January of 1989, it did not contain any information whatever as to the rate of incidence of medical neglect of newborns with disabilities(4)--despite the fact that the commission's own announced purpose was to "determine the nature and extent of the practice of withholding of medical treatment or nourishment from handicapped infants."(5) Indeed, the report does not even include raw numbers on the total births and deaths of severely disabled infants in the United States. William B. Allen, chairman of the commission, has described this data collection process as "a certain kind of research incontinence."(6)

In addition to its failure to gather any data regarding the incidence of "medical neglect," the commission also refused to circulate its report among critics in advance of its finalization and release. The commission heard no testimony from an official representative of the American Medical Association or the American Academy of Pediatrics. And the report remarkably underrepresents criticism, which is abundant in the literature at large, about the Rehabilitation Act of 1973 Baby Doe regulations and the subsequent regulations issued pursuant to the Child Abuse Amendments of 1984. Mr. Allen notes that when he proposed specifically that the draft report be sent out to interested parties for confidential comment, the drafting subcommittee flatly refused.(7)

The Commission's Assumptions About Medical Care of Infants with Disabilities

Perhaps the best illustration of the commission's failure to appreciate the medical realities surrounding the treatment of infants with disabilities is its discussion and endorsement of the Child Abuse Amendments of 1984.(8) Pursuant to these Child Abuse Amendments, Congress made federal funding to child protective service (CPS) agencies conditional on the extension of state child abuse programs and procedures to cover situations of medical neglect involving inappropriate withholding of treatment from disabled infants with life-threatening conditions. The act defines "withholding of medically indicated treatment" as "the failure to respond to the infant's life-threatening conditions by providing treatment (including appropriate nutrition, hydration, and medication) which, in the treating physician's or physicians' reasonable medical judgment, will be most likely to be effective in ameliorating or correcting all such conditions . . . ."(9) Three treatment exceptions are specified. Failure to provide treatment (other than appropriate nutrition, hydration, or medication) to an infant with disabilities is not "medical neglect" when the treating physician or physicians reasonably determine that:

(A) the infant is chronically and irreversibly comatose;

(B) the provision of such treatment would (i) merely prolong dying, (ii)

not be effective in ameliorating or correcting all of the infant's

life-threatening conditions, or (iii) otherwise be futile in terms of the

survival of the infant; or

(C) the provision of such treatment would be virtually futile in terms of

the survival of the infant and the treatment itself under such

circumstances would be inhumane.(10)

In its attempt to resolve all treatment dilemmas for all infants facing every kind of life-threatening disorder, in less than two hundred words, through rigid provisions that are heavily oriented toward aggressive medical intervention, the act disregards both the medical and the ethical complexities associated with treatments that offer no substantial help or cure but impose significant burdens of pain, extended suffering, and the risk of further harm. The inadequacy of the act can be best illustrated through analysis of its application to the following hypothetical situations.

While the federal law permits withholding of treatment for infants who are "chronically and irreversibly comatose," that treatment exception would not be easily applied to an infant in a persistent vegetative state (PVS)--a condition that is medically distinct from coma. With PVS there is a sleep/wake cycle, random eye movement, and some reflexive response to deeply painful stimuli. However, there is no consciousness and no interaction with others or with the environment.(11) PVS is a "twilight zone of suspended animation,"(12) which many people would not choose to prolong with noncurative techniques of medical maintenance.

Yet PVS is not, medically speaking, a coma, which is a state of unconsciousness resembling sleep. Indeed, one lower court in Minnesota has specifically concluded in a "Baby Doe" case that "coma" does not include PVS and that PVS is not covered by any of the other exceptions in the act allowing for nontreatment.(13) Nonetheless, broad medical, ethical, and legal backing exists for the termination of life support systems for patients in a permanent vegetative state--including those patients who never expressed their treatment/nontreatment preferences.(14) For example, in In re LHR,(15) the Supreme Court of Georgia upheld parents' rights to exercise their permanently vegetative infant child's constitutional right to terminate life-sustaining treatment.(16) The infant in that case suffered a medical catastrophe fifteen days after her apparently normal birth, and she was left in a chronic vegetative...