An Anguished Mother Champions Her Ailing Child’s Right to Die

NORFOLK, Conn. —  Every day, Stephanie Lynn Marshall takes almost a dozen drugs through a tube into her stomach.

Clonopin and Tegretol to control her seizures. Codeine, Tylenol and Percodan for pain. Atarax, Adapin, Lorazapam and Valium to relieve anxiety. Tussionex to clear her lungs. Maalox to settle her stomach.

She is only 12, but she is blind and mute. Her body jerks; her stiffened legs are crossed like scissors, and her hipbones are being gradually pulled from their sockets. She stopped talking when she was 4 1/2. Tears are her words, and crying is a great effort.

Stephanie’s 4-foot-5-inch frame is wasted by a terminal brain disorder, a genetic, degenerative illness known as Batten’s Disease. The ordeal she and her family are suffering is a case history in the debate over the right to die. It also underscores the need for guidelines in dealing with dying children.

Mourns for Daughter

Catherine Marshall weeps for her only child. “We mourn for what we thought our children would be; we mourn for what they are, and we mourn for what they never will be,” she said in an interview.

She cannot even hold her daughter because moving Stephanie increases the pain in her limbs. “The hardest thing I have ever done is to stand with her when she is crying and know that I do not have it within my capacity to change that,” she said.

But Marshall did have the capacity to change policies that might have kept her daughter hooked to life-sustaining machines when her body finally fails her. Because of her mother’s efforts, Stephanie, when she dies, will die peacefully and without artificial heroics.

Before Marshall lobbied the Connecticut Department of Mental Retardation, dying patients within its care were always resuscitated unless doctors certified that death would occur within weeks. Now, department guidelines extend this conditional authorization to withhold resuscitation to cases like Stephanie’s, in which the time of death cannot be predicted.

“I believe that Stephanie will live as long as she chooses and that when she dies that will also be her choice,” Marshall said. “And when she goes, I won’t lift a hand to stop her.”

Right-to-die cases have prompted ethical and legal debates. The U.S. Supreme Court recently agreed to hear its first right-to-die case, a Missouri couple who want to remove their brain-damaged daughter from life support.

Last April, debate turned to desperation. An Illinois man held medical workers at gunpoint in a Chicago hospital while he disconnected his 15-month-old comatose son from life support and cradled him in his arms until he died. Fearing prosecution, the hospital had refused to unhook the child despite the family’s requests. A grand jury refused to indict the father.

No adequate national guidelines exist for the care of terminally ill children, said Fenella Rouse, acting director of the Society for the Right to Die in New York.

At the society’s urging, a panel of doctors, nurses, attorneys, ethicists and parents will gather Nov. 2-4 in Tarrytown, N.Y., to propose such guidelines.

“Although many of us feel strongly that parents should be the major decision maker for children . . . physicians and hospitals have an obligation to protect the interests of children if parents are making bad decisions,” said Alan Fleischman, a New York pediatrician who will lead the group.

“The question is: How do we determine when parents’ decisions are bad? . . . And, what safeguards should we have for children? Should there be ethics committees? Should there be federally mandated reviews?”

An American Medical Assn. report says physicians should respect the wishes of terminally ill patients or their families on whether to apply lifesaving measures. When doctors and families agree on treatment for the patient, the report says, there is less likelihood of the courts’ stepping in.

Both Parents Agree

In Stephanie’s case, both parents agree that she should not be resuscitated.

Catherine and James Marshall were divorced almost three years ago, driven apart by the stress and anger they felt over Stephanie’s illness.

“That anger, even if not directed at the other party, takes a toll on the relationship,” Marshall said. “The blessing is that Stephanie’s father and I both love her very much and we can work together on her behalf.”

James Marshall, a 38-year-old construction company manager who lives in Mystic, Conn., said it would serve “no purpose just to revive her so she can die again. To keep her alive at this point with a disease that’s incurable is only keeping her alive for my wife and myself for our own feelings.”

Catherine Marshall left her job as an elementary school music teacher in 1981 to care for Stephanie at home. But as the child grew older and bigger, it became difficult for the Marshalls to move her and to deal with the disease’s growing complications.

Five years ago, she was moved into Ann’s Nursery for Babies in Norfolk, a home for handicapped children. The private nursery accepts some patients placed by the Department of Mental Retardation and therefore follows its guidelines on resuscitation.

Catherine Marshall, 41, now an administrative assistant at Yale University, generally visits Stephanie once every other week, driving the 65 miles one way from her home in New Haven.

“Hi, Stef, Mommy’s here, I love you,” she says at the child’s bedside. She reads stories and serenades Stephanie, accompanying herself on an electronic Autoharp.

Even though Stephanie’s eyes are closed most of the time, Marshall is sure that her daughter knows when her mother is there.