Couples Confront Life-Death Dilemma in Study

Researchers recently posed this dilemma to 96 volunteer couples: Your newborn has a serious spinal condition. With surgery, the child will grow up severely disabled; without treatment, the baby probably will die.

The University of Kansas researchers developed the scenario in hope of shedding new light on where society draws the line on human life. The fictitious problem was so emotionally wrenching that it caused husbands and wives to bicker and quarrel for hours. Tears welled in the eyes of other volunteers who spent up to five hours trying to reach a consensus.

The researchers did not concentrate on the couples’ final judgment; they were more interested in who would influence the decision--doctors, clergy, relatives, friends--and whether it would hinge on financial, religious, social or legal issues.

Many couples opted for treatment, but hundreds of pages of transcripts from recorded conversations reflected a wide range of responses.

“I think we should have done something about this before we had the baby,” one husband said in an interview. “I think now that we have the baby, we have to live with it.”

‘Let’s Be Practical’

Another husband said: “If I were in that condition, I certainly wouldn’t want somebody to prolong my life. Let’s be practical. They’d have very little to live for, if anything.”

The researchers have completed the first phase of a three-year $300,000 study financed by the National Institute for Handicapped Research. In the second and third phases, they will talk with couples and single parents of disabled children, doctors and others to gain insight into the value society places on human life.

First-phase results revealed that while many volunteers were in two-career households, they tended to revert to traditional gender roles when faced with the prospect of raising a disabled child. The researchers also found that the men’s decision-making included themselves, the spouse and doctor, but the women added the newborn’s siblings to the group.

The researchers learned that while studies say parents feel negative emotions in this situation, some said they had hope and were “happy to have a baby.”

The newlywed couples, identified through Kansas and Missouri marriage records, first listened to a tape recording of a “doctor” explaining that their infant had spina bifida cystica. Without surgery to close the baby’s exposed spinal cord, an infection probably would develop, and the child probably would die. Even with surgery, the child would never walk unaided and would lack bowel or bladder control.

Afflicted With Hydrocephalus

There was another complication: The child was born with hydrocephalus, or water on the brain. The doctor tells the couple that although further brain damage could be averted, some damage may have occurred before birth. There is a possibility that the child will have learning problems or suffer some degree of mental retardation.

Asked to envision their disabled son growing up, many respondents described an athletic, strong boy with racing stripes on his wheelchair. They described the disabled girls as “not being very pretty,” said Daryl Evans, assistant professor of sociology and principal investigator, expressing surprise at the sexism that surfaced in the findings.

The gender issue showed up in other data with many respondents reverting to typical male and female roles in responding.

In most cases, the man assumed the woman would be the one to care for the child, said Pat Barber, coordinator of the project, who is working on her doctorate in special education.

“Some women said, ‘Now, wait a minute. I have a job. I have a career. We’re going to have to work something out,’ ” Barber said. “The men automatically assumed, and some women fought that assumption.”

Evans said the women worried about the psychological stress of raising the child and what their role would be, while the men tended to be more concerned with health insurance and economic security.

The volunteers also were given a list of concerns, including how the child would affect the stability of their marriage and who would have the major responsibility of care. Each spouse was asked to rank how important each issue was personally, and how important they thought it would be to their partner.

“I’m not trying to take men to task on this, but when I first saw it, I was amazed,” Evans said. “I would have predicted that men would have known just as much about women’s concerns. There is a lot of sexism in this society. It wasn’t something we were looking for.”

The research team contends that modified versions of this scenario will pop up more frequently in the future as scientists learn more ways to artificially sustain life.