Seriously Ill Children - Who Makes Medical Decisions For Infants?

Court Cases Attempt to Define Parental Roles

THE "BABY DOE" RULES.

In April 1982 an infant with Down's syndrome was born at Bloomington Hospital in Indiana. The infant also had esophageal atresia, an obstruction in the esophagus that prevents the passage of food from the mouth to the stomach. Following their obstetrician's recommendation, the parents decided to forego surgery to repair the baby's esophagus. The baby would be kept pain-free with medication and allowed to die.

TABLE 5.6
Spina bifida rates and number of live births with spina bifida and rates per 100,000 live births, 1991–2002

Disagreeing with the parents' decision, the hospital took them to the county court. The judge ruled that the parents had the legal right to their decision, which was based on a valid medical recommendation. The Indiana Supreme Court refused to hear the appeal. Before the county prosecutor could present the case to the United States Supreme Court, the six-day-old baby died.

The public outcry following the death of "Baby Doe" (the infant's court-designated name) brought immediate reaction from President Ronald Reagan's administration. The Department of Health and Human Services (HHS) informed all hospitals receiving federal funding that discrimination against handicapped newborns would violate Section 504 of the Rehabilitation Act of 1973 (PL 93-112). This section (nondiscrimination under federal grants and programs) states:

TABLE 5.7
Percent of births with selected medical or health characteristics, by race, Hispanic origin, and birth place of mother, 2002

No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, 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.

Furthermore, all hospital delivery rooms and nurseries were ordered to have posters warning that "DISCRIMINATORY FAILURE TO FEED AND CARE FOR HANDICAPPED INFANTS IN THIS FACILITY IS PROHIBITED BY FEDERAL LAW." The posters listed a toll-free hotline for anonymous reports of failure to comply.

Although government investigators were summoned to many hospitals to verify claims of mistreatment (the hotline had 500 calls in its first three weeks alone), no violation of the law could be found. On the contrary, the investigators found doctors resuscitating babies who were beyond treatment because they feared legal actions. Finally, a group led by the American Academy of Pediatrics filed suit in March 1983 to have the Baby Doe rules overturned. Judge Gerhard Gesell agreed, saying in part that the Reagan administration could not prove that these rules would improve the care of handicapped infants.

BABY JANE DOE.

The debates about handicapped babies and their right to medical treatment became focused on another handicapped infant born in October 1983. "Baby Jane Doe" had severe spina bifida. Her deformities were so serious that even if she were to undergo

TABLE 5.7
Percent of births with selected medical or health characteristics, by race, Hispanic origin, and birth place of mother, 2002

painful surgeries (which might not fix her problems) she would suffer from severe mental retardation and physical disability. The Reagan administration and pro-life advocates entered discussions about the care of this infant; however, the court ruled that the government and strangers had no business interfering with decisions made by Baby Jane Doe's family.

The Baby Doe and Baby Jane Doe cases resulted in an agreement among government officials, physicians, and pro-life advocates about the medical and ethical treatment of newborns with life-threatening conditions, and Congress passed a law based on the language of this agreement. On October 9, 1984, President Reagan signed an amendment to the Child Abuse Prevention and Treatment Act (PL 98-457). It specified that "medically indicated treatment" was not required (1) if the infant was irreversibly comatose, (2) if the treatment would "merely prolong dying," or (3) if the treatment would be "virtually futile in terms of the survival of the infant and the treatment itself under such circumstances would be inhumane."

In January 1984 the Department of Health and Human Services (HHS) issued regulations promoting the establishment of Infant Care Review Committees to help hospital personnel make decisions about the care of severely disabled infants. On April 15, 1985, HHS published regulations that required examination of medical records and independent medical examinations of disabled newborns. However, in June 1986 the U.S. Supreme Court invalidated the HHS regulations and has since barred the federal government from intervening in these cases.

Treating Critically Ill Infants and Children

The American Academy of Pediatrics (AAP) contends that many physicians and laypersons agree that some critically ill infants who were previously denied treatment may benefit from, and should receive, medical and surgical care. Examples of these are Down's syndrome babies with gastrointestinal blockage and babies with less severe forms of spina bifida. However, in cases involving extreme prematurity, complex birth defects, and life-limiting chronic disorders, there is less agreement on the extent of treatment.

In "Ethics and the Care of Critically Ill Infants and Children" (Pediatrics, vol. 98, no. 1, 1996), the AAP Committee on Bioethics pointed out that the federal Child Abuse Prevention and Treatment Act brought about two unintended consequences. The law, with its three exceptions, might have inadvertently given physicians more leeway in making judgments about seriously ill infants. On the other hand, fear of lawsuits might predispose some physicians to overtreat irreparably ill infants.

Because the outcomes of neonatal intensive care are often unpredictable, physicians and parents have to rely on their best judgment. Nonetheless, according to the AAP, evidence shows that decreased mortality resulting from neonatal intensive care has been accompanied by increased

TABLE 5.8
Number and percent of low birthweight and number of live births by selected characteristics, 2002

TABLE 5.8
Number and percent of low birthweight and number of live births by selected characteristics, 2002

TABLE 5.8
Number and percent of low birthweight and number of live births by selected characteristics, 2002

TABLE 5.9
Low-birthweight live births, by mother's race, Hispanic origin, and smoking status, selected years 1970–2001
[Data are based on birth certificates]

mental and physical limitations among survivors that impose burdens on affected children and their families.

With the escalating cost of critical care, some observers believe that resources would be better used to treat infants who have less severe disabilities. Others feel that this would discriminate against those least able to advocate for themselves—the disabled, the poor, and the dying. The AAP believes that these decisions should be made at the public policy level—not at the bedside, where parents and doctors may be in intense emotional distress.