The U.S. Civil Rights Commission report, "Medical Discrimination Against Children with Disabilities": a brief commentary.

• Author: Tucker, Bonnie P.

For many years there has been a national debate over the moral and legal obligations owed to infants born with physical or mental disabilities. The crucial issue is, to what extent, if any, should parents or medical authorities be permitted to withhold medical treatment or nourishment from infants with disabilities? In September 1989 the United States Civil Rights Commission addressed this question in a report entitled "Medical Discrimination Against Children with Disabilities"(1) that strongly supports the Reagan/Bush administration's philosophy of preserving life at all costs.(2) The commission report basically concludes that to consider an infant's disability when determining whether to provide that infant with lifesaving medical treatment constitutes impermissible discrimination, since as a general rule the infant's disability is not relevant to that medical decision. The report contains numerous recommendations for achieving the goal of providing maximum medical treatment to all infants with disabilities. This article is an overview and critique of four major aspects of the report: quality of life considerations, section 504 of the Rehabilitation Act, the Child Abuse Amendments, and infant care review committees.(3)

Quality of Life Considerations

A fundamental issue with respect to the question of whether medical treatment may be--or should be--withheld from infants with disabilities is whether a "quality of life" analysis should be conducted. Proponents of the parental right to choose death for infants with disabilities operate from the basic premise that the quality of life of many severely disabled newborns will be so unacceptable that the lives of those children constitute fates worse than death. Opponents of the parental right to choose death for infants with disabilities, however, argue that people with disabilities adjust to their disabilities and generally achieve what to them is at least a minimally acceptable quality of life--certainly preferable to death. The latter group contends that quality of life analyses are not appropriate in this context.

Part of the problem in attempting to compare and analyze the competing viewpoints of proponents and opponents of the quality of life rationale is that the two groups often focus upon two distinct populations. Generally, the examples given by quality of life proponents involve profoundly brain damaged children who are kept alive by constantly improving technology, but who are purportedly unable to "appreciate any of the joys of living."(4) They often focus upon multiply disabled newborns who have limited expected life spans (frequently measured in days or weeks) with dismal prognoses.(5) To the converse, quality of life opponents focus primarily on less severely disabled persons who have accommodated to their disabilities and have achieved at least a minimally acceptable quality of life. They argue that disabled persons themselves claim that they do appreciate the joys of life and would not choose death over life as a disabled person.(6)

In addressing the quality of life issue, the commission report focuses solely on the arguments fostered by those who claim that a quality of life analysis is not appropriate. The report centers primarily on two factors: societal attitudes and inadequate or inappropriate medical decisions.

First, the commission recognizes that rather than looking at the problems faced by people with disabilities from a medical quality of life approach, which focuses on the inabilities of people with disabilities to perform in certain aspects of life, adults with disabilities often view their problems in sociopolitical terms.(7) The sociopolitical approach focuses on the attitudes of society toward people with disabilities.(8) People with disabilities argue that the greatest barriers they face are not the physical barriers created by their disabilities, but the attitudinal barriers created by society. As one commentator noted in the Disability Rag:

The issue is rights, but the issue is not the right to die. It is the right

to live in a society that wants you. And it's easier for our society to

get rid of these kinds of people right at the start than to deal with

why life is so horrible for these people. Our society is what makes it

horrible. We have the power to change that.(9)

The theory is that rather than allowing infants with disabilities to die, society must change its negative and outmoded attitudes about persons with disabilities and must alter the physical and emotional environment of our society so that life in this country is comfortable for both disabled and nondisabled people. The underlying premise is that since an individual's quality of life is directly based on environmental factors created by society, if the concern is for the child's quality of life, the focus should be on altering those environmental factors rather than on eliminating the child.

Second, the commission recognizes that decisions about the potential abilities, or lack thereof, of children with disabilities are frequently made by doctors who (a) have received little training in the area of mental and physical disability and are unable to render educated opinions about such matters, (b) may be making such decisions based on false stereotypes about the capabilities of persons with disabilities, (c) may be subjectively evaluating the value of a disabled child's life based on unintentional but ingrained prejudices about people with disabilities, or (d) may be making such decisions based upon the wealth or education of a disabled child's parents or the socioeconomic environment in which the child's family resides.(10) The report cites as an example the quality of life formula utilized by medical personnel at Oklahoma Children's Hospital when determining whether to recommend infants with myelodysplasia for beneficial medical care.(11) The formula utilized is stated as follows: quality of life equals the infant's natural physical and intellectual endowment times the contributions from home and family and the contributions from society.(12) Thus, the Oklahoma medical team's decisions as to whether children with myelodysplasia should live or die were premised on such nonmedical factors as the family's wealth, the socioeconomic environment in which the child lived, and the child's estimated intellectual and physical abilities.

Further, the report cites numerous instances in which medical predictions about the poor quality of life of disabled infants were inaccurate and later proved to be wrong.(13) In one cited case parents of an infant born with spina bifida were told that the child would not develop any cognitive skills, would not achieve "any meaningful interaction with her environment, nor ever achieve any interpersonal relationships," and that the child would be severely retarded, epileptic, paralyzed from the waist down, bedridden, and in constant pain.(14) At the age of four, however, the child was able to have meaningful relationships with her parents and friends, was attending school in a wheelchair, was communicating intelligently with others, and was not in pain.(15)

The commission report is thorough and persuasive with respect to the covered aspects of the policy question involving quality of life analyses. The commission correctly concludes that medical decisions with respect to keeping disabled infants alive should not be premised on stereotypical or prejudicial attitudes about the future abilities of such children. Notably absent from the report, however, is any discussion of opposing viewpoints that do in fact exist. For example, in a 1984 survey of seven nationally prominent pediatricians, all but one (C. Everett Koop, Surgeon General of the United States under President Reagan), agreed that in some cases medical treatment for disabled newborns may cause harm to such infants "by prolonging what will be an intolerable existence."(16)

The problem, of course, is that the term "intolerable existence" is not defined. That term is ambiguous and could mean a life of pain to some individuals or a life of dependency to others. Because of this inherent ambiguity, proponents of the "life is always preferable to death" policy are concerned--and rightly so--that once exceptions are made for some infants based upon the existence of disabilities, there is no assurance that societal stereotypes, prejudices, and biases will not continue to play a significant part in the process of determining who lives and who dies. Rather than virtually ignoring the position that decisions to withhold medical treatment to disabled infants are sometimes based on valid quality of life rationales, however, the commission report should have recognized the validity of that proposition but honestly stated what it implicitly concluded: Due to vast abuse of the quality of life analysis, that analysis should be viewed as inherently discriminatory and thus improper. The flaw in the commission report is not that it rejects the quality of life analysis but that it refuses to acknowledge that death is sometimes...