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Let's take Baby Doe to Alaska.

Let's Take Baby Doe to Alaska

Many commentators have criticized the "Baby Doe regulations" issued by DHHS in 1985 as embodying a "medical indications policy," that leaves inadequate room for moral considerations, such as parental values, in decisionmaking about treatment for seriously ill or impaired newborns. A recent report of the U.S. Commission on Civil Rights, Medical Discrimination against Children with Disabilities, presupposes this narrow interpretation, asserting that prognosis is the only relevant treatment consideration and decrying consideration of a child's best interest by parents, the health care team, or ethics committees. The report charges that "discriminatory denial of medical treatment...has not dramatically changed since the implementation of the Child Abuse Amendments of 1984..." (pp. 148-49).

There are several ironies here. First, the Civil Rights Commission drew this conclusion without ever gathering any data about changes in the incidence of "medical neglect." Even William Allen, the chair of the commission, remarked that for a report costing half a million dollars, this reflected "a certain kind of research incontinence" (154-55).

In addition, the regulations have probably served to "protect" treatment decisions from the influence of parental values, but with substantial overtreatment being the result. For example, only 52 percent of surveyed neonatologists felt certain that the regulations allow termination of treatment for a 550-gram premature infant with less than a 5 percent chance of survival (Kopelman, NEJM 318(11):677-88). Over a quarter of pediatricians in Massachusetts would (mis)interpret the guidelines to require maximum therapy for anencephalic infants (Todres, Pediatrics 81(5):643-49).

The most tragic irony, however, is that while the government has expended enormous energy to protect severely impaired infants from the influence of "secular" concerns such as the best interest of the child, it has done almost nothing to insure that infants and children with acute and manifestly treatable medical needs receive therapy despite their parents' religious beliefs. Since 1985, many otherwise healthy children with meningitis, seizures, pneumonia, and diabetes have died - unnecessarily - because religious exemption clauses in state child abuse statutes have allowed parents and religious "healers" to avoid their obligation to obtain treatment and to report medical neglect.

In Alaska, for example, "There is no failure to provide medical attention" if a child "is provided treatment [sic]...through prayer in accordance with the tenets...of a recognized religious denomination..." (Alaska Statutes, Sec. 11.51.120(b)). DHHS has the power to require revision of such statutes, but it has done so in only one state (Ohio).

Isn't it inconsistent, and unfair, for the federal government to allow parents to impose their religious beliefs on children in situations of clear medical benefit yet simultaneously attempt to constrain the options of parents in situations of uncertain outcome or considerable pain?

If DHHS continues to tolerate religious exemption clauses which state or imply that prayer can legally substitute for medical attention, perhaps parents should consider this option instead of highly burdensome or invasive treatments proposed under a narrow interpretation of the "Baby Doe" regulations. Or perhaps it would be better for DHHS to force repeal of religious exemption statutes in order to establish a uniform standard - requiring parents to provide proven efficacious and objectively beneficial treatment. Until that occurs, can DHHS claim that the Baby Doe regulations have ever actually reached Alaska?
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Title Annotation:Health and Human Services Department's regulations concerning children with disabilities
Author:Nolan, Kathleen
Publication:The Hastings Center Report
Date:Jan 1, 1990
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