The Department of Health and Human Services plans to propose soon a new version of the controversial "Baby Doe" rule requiring that hospitals and clinics receiving federal aid give handicapped infants the same care and treatment given nonhandicapped babies.
In a concession to medical and pediatric groups whose successful court challenge struck down the original "Baby Doe" rule two months ago, an appendix to the new draft proposal specifies that federal law "does not require the imposition of futile therapies which merely temporarily prolong the process of dying of an infant born terminally ill."
What federal anti-discrimination laws prohibit, according to the appendix, is "any denial of benefits or services because of a handicap such as mental retardation, blindness, paralysis, deafness or lack of limbs. Any judgment that a person is not worthy of treatment due to such handicap is not . . . a medical judgment, even if made by doctors. . . . "
The language of the new proposal, which could be published in the Federal Register as early as this week, differs only slightly from the original March 7 rule. It still contains the two provisions that doctors found most objectionable: the installation of a toll-free "hot line" for anonymous complaints to HHS and the requirement that hospitals post a notice saying federal law forbids discrimination against handicapped infants and listing the hot-line number.
Instead of requiring the posting of a notice in delivery, maternity and intensive care wards, however, the new version says the notice must be posted in the nurses' station.
The rule takes its name from the case of a Bloomington, Ind., baby born last year with Down's syndrome and respiratory and digestive complications. The infant died after its parents, supported by their physician and the courts, allowed food and treatment to be withheld.
The "Baby Doe" rule prompted a legal and ideological tug-of-war, with right-to-life groups--supported by President Reagan--contending that the federal government had to protect disabled infants' lives, and groups like the American Academy of Pediatrics saying the rule was an unprecedented intrusion into personal and medical decisions.
Sources said that HHS officials have scheduled meetings today with doctors, right-to-life advocates and disability rights advocates to discuss the new proposal.
With the addition of a long preamble and appendix discussing specific applications, the new rule seems designed to conciliate the medical community and avoid the procedural shortcomings that doomed the earlier version. Instead of issuing an "interim final" rule taking effect immediately, HHS plans to publish an "advanced notice of proposed rulemaking," seeking comments on some of the most volatile issues.
A draft copy of the proposal, obtained by The Washington Post, lists specific issues on which the department seeks comment, including whether hospitals and other facilities should tell parents of a handicapped child of available community services for the handicapped and whether hospitals should be required to establish internal review boards to monitor cases where parents or doctors decide to withhold treatment from an infant. The preamble also provides guarantees of patient confidentiality.
In another departure from the earlier version, the rule not only provides for federal intervention but, in the preamble, says HHS "expects that states will follow all necessary procedures for investigating allegations of child abuse and neglect that involve an imminent danger to life." State child protection agencies receiving federal funds would be obligated to act as vigorously to protect handicapped children as they do to protect the nonhandicapped.
Informed of the proposal's contents, James Breen, president of the American College of Obstetricians and Gynecologists, said hot lines "fall within the category of overt intrusion into the relationship of the doctor and the patient and . . .would not be acceptable to anyone . . . . It comes at a time when parents and doctors are trying to make a painful decision, a time when these decisions are most difficult and painful."
Breen added that he feels there is a "gray zone" between cases of children with Down's syndrome, a genetic abnormality that leads to retardation, and anencephaly, a major brain abnormality that is always fatal. Down's babies, he indicated, should be treated. But in the "gray zone," the decision "should be left to a committee including pediatricians, obstetricians and the parents involved . . . . It should be made at the grass-root, gatekeeper, hospital level."
Gary Curran, a spokesman for the American Life Lobby, one of the groups that pushed hard for the rule, said he was pleased with the contents of the new version, "but regardless of what the rule says, it's only as good as its enforcement and investigation. HHS has thus far been very sloppy."
U.S. District Court Judge Gerhard A. Gesell struck down the March 7 rule on procedural grounds because HHS allowed no time for public comment, but also strongly criticized the administration for taking "no consideration whatsoever of the disruptive effects" of a rule that sets up a "hot-line informer" system in hospitals.