DISABLED CHILD'S RIGHT TO LIFE UPHELD BY TEXAS COURT

By NRLC Dept. of Medical Ethics

Parents who wished to deny lifesaving treatment to their newborn child to avoid raising a child with disabilities are not entitled to monetary damages from the hospital that treated her over their objection, a Texas appellate court ruled on December 28, 2000. An appeal to the Texas Supreme Court is expected.

Reversing a trial court decision that held the hospital liable for more than $60 million, the Fourteenth Court of Appeals held, by a vote of 2 to 1, that under Texas law parents may direct denial of treatment necessary to preserve their children's lives only when the children's medical condition is certifiably terminal. The court also noted that federal regulations implementing the Child Abuse Amendments of 1984 did not authorize denial of treatment in this case.

"The decision is an important reaffirmation of the too-often- ignored fact that the law protects the lives of children born with disabilities," said Burke Balch, director of NRLC's department of Medical Ethics. "The eventual ruling of the Texas Supreme Court on the appeal to be taken from this case will be of critical importance in signaling whether those born with disabilities will obtain the law's equal protection of their right to live."

When Karla Wolf was admitted to Woman's Hospital of Texas on August 17, 1990, experiencing premature labor, she and her husband, Mark Miller, were informed by physicians "that if the baby were born alive and survived, she would suffer severe impairments,"according to the appellate court ruling. " Accordingly, the Millers orally requested that no heroic measures be performed on the baby after her birth."

After initially agreeing, the doctors determined that under hospital policy life-sustaining procedures were required. They provided them to the Miller's daughter, Sidney, who was born later that day. She survived, experiencing "severe physical and mental impairments" whose nature is not specified in the court opinion.

The court's majority opinion recognized that parents have a right to care and custody of their children. But the judges also emphasized parents' legal duty to provide their children needed medical care and the "legal and policy interest ... of the state ... to guard the well-being of minors, even where doing so requires limiting the freedom and authority of parents over their children."
The court observed, "Sustaining life ... keeps open the option to act on a change of heart, subsequent advancements in medical treatment, or natural improvement in a patient's medical condition.

A decision to withhold life-sustaining medical treatment ends life permanently and irrevocably." It also noted that "the decision an infant might have made for herself about consenting to medical treatment under the circumstances cannot be known by others."The majority warned, "[T]o infer that parents have a common law right to withhold urgently needed life-sustaining treatment from non-terminally ill children would pose imponderable legal and policy issues. For example, if parents had such a right, would it apply to otherwise healthy, normal children or only to those with some degree of abnormality? If the latter, which circumstances would qualify, which would not, and how could any such distinctions be justified legally?"

For the past three decades, there has been controversy over cases in which children born with disabilities have been denied lifesaving medical treatment. The best-known instance is "Infant Doe."

Infant Doe was born with Down syndrome in Bloomington, Indiana, on April 9, 1982. He slowly starved to death as court after court, in a widely publicized process, turned down efforts to save his life. He died after six days even as attorneys were en route to file a petition with the United States Supreme Court.

In March 1983, the Reagan Administration established a hotline to report cases of such denial, which it maintained would violate existing federal law prohibiting discrimination on the basis of handicap among recipients of federal funds, a position ultimately rejected by the U.S. Supreme Court in June 1986.

In the interim, Congress adopted the Child Abuse Amendments of 1984.

Under that law, which remains in effect, in order for a state to receive federal funding for its child abuse and neglect program, it must have in place and enforce procedures to prevent " withholding of medically indicated treatment from disabled infants with life-threatening conditions." (The exact nature of " medically indicated treatment" is detailed in the statute and its implementing regulations.)