• U.S.

Law: Whose Lives Are They Anyway?

4 minute read

An infant and a cerebral palsy victim prompt painful questions

The rights of the handicapped and the duties of those who handle their medical treatment once again became an emotional public issue last week in two controversial court cases. In New York, the U.S. Justice Department filed an unprecedented lawsuit aimed at finding out whether a couple improperly refused to permit life-prolonging surgery on their severely handicapped newborn infant. In California, Elizabeth Bouvia, 26, who has been rendered helpless by cerebral palsy, was in a hospital, where she wanted to starve herself to death. When hospital officials told her that they could not aid her suicide, she went to court seeking the right to be treated as she wished.

Though different, both cases raised painful questions, summarized by the title of the play and movie Whose Life Is It Anyway?, and sought answers from lawyers and judges, who are the first to admit they are ill-equipped to deal with them. Baby Jane Doe, as she is known in New York court documents, was born Oct. 11 with a protruding spinal cord, excess fluid on the brain, an abnormally small head and other serious defects. Doctors concluded that the child would be paralyzed, severely retarded and in pain for however long she lived. That term, they added, would be a maximum of two years without corrective surgery; with it, she might live to be 20. Baby Jane’s parents decided that hers would not be a life worth living and rejected any operation.

A. Lawrence Washburn Jr., a lawyer and right-to-life activist, was tipped off about the case, presumably by a hospital employee; he sued to force an operation. A local judge ruled in his favor, but the state’s highest court, labeling Washburn’s participation in the case “offensive,” said that he had had no standing to sue. The parents of Baby Jane Doe thought their legal agony was over.

Not so. With vigorous encouragement from the American Life Lobby, the Justice Department sued University Hospital in Stony Brook, N.Y., to obtain Baby Jane’s medical records as part of an investigation into whether there had been a violation of a federal law prohibiting discrimination against the handicapped. The suit is the latest action in a year-old Reagan Administration campaign, initiated after an Indiana baby was allowed to die, and designed to force hospitals to do whatever is necessary to prolong the life of handicapped newborns. University Hospital officials are fighting to protect the confidentiality of the records.

While parents, lawyers and judges were all speaking on behalf of Baby Jane Doe, Elizabeth Bouvia was speaking eloquently for herself. She has spent most of her life completely disabled and in severe pain from congenital cerebral palsy. The clarity of her mind has not been affected by the debilitating disease—in 1981 she earned a bachelor’s degree in social work—but what she calls her “useless body” finally drove her to suicidal despair. In September, unwilling to involve friends or family and anxious to avoid the indignity of dying paralyzed and untended at home, she entered the psychiatric unit of Riverside General Hospital, where she planned to “refuse further nutrients and permit the natural process of dying to occur.” But Bouvia is not dying of natural causes; she could live many years. Her death wish has thus created “major ethical problems for the doctors,” says the hospital’s attorney, William Katzenstein, who argues that they cannot stand by and oversee a suicide by starvation.

A court last week ordered the hospital not to move Bouvia until the suit is resolved, and she has agreed to continue taking liquid proteins to sustain herself for the time being. “You can only fight so long,” she says. “It is more of a struggle to live than to die.” Baby Jane Doe’s parents have concluded that their daughter should not have to live through a similar struggle. “We love her very much,” her mother said last week, “and that’s why we made the decision we did.”

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