When Two Must Be of One Mind

Parents are expected to sometimes differ on subjects such as discipline and schoolwork, often simply agreeing to disagree. But when a mother and a father clash over the medical treatment of their child, a resolution becomes critical.

Whether the differences arise from personal philosophy or religion, consensus--or at least a compromise--about medication and surgery is of the utmost importance. Otherwise, children suffering with maladies ranging from hyperactivity to cancer can languish at a time when they most need emotional support and stability. Divorce only ratchets up the tensions.

Some parents manage to keep the child in focus and work out their differences. But when their positions are intransigent, or the child becomes a pawn, others must step in. Doctors, nurses, social workers, chaplains and ethics committees all may attempt to ensure the child’s needs are met. When they fail, the case may end up in court.

Increasingly, medical teams at major hospitals communicate early with families to avert prolonged disagreements that could delay or derail a child’s care.

“We just try to get involved from the get-go,” said Marisha Madrigal, a social worker with the neonatal intensive care unit at Childrens Hospital Los Angeles.

Because families today are more savvy about health care, more involved in decision-making and cognizant of their rights as consumers, “the whole health-care team is really upfront with families,” said Madrigal, a hospital ethics committee member. “We sort of lay it out for them. For the most part, even if they’re miles apart, we get them to be close to the same page.”

The most common family divisions seem to arise over whether to medicate children for behavioral and neurological problems, such as attention deficit hyperactivity disorder, autism and depression. Often, the medications haven’t been tested in young children, and one parent may be especially concerned about long-term effects.

That was the obstacle facing Terry Vigil and her husband, Lee Stephens.

Of their five children, ranging in age from 16 months to 11 years (Vigil has another child from a previous marriage), four have autism complicated by attention deficit hyperactivity disorder or learning disabilities; the youngest has been diagnosed as developmentally delayed.

Stephens cares for the children at the couple’s South-Central Los Angeles home while Vigil works with severely developmentally disabled youngsters through the county Department of Education. Although he was long opposed to medicating them, his feelings have evolved.

From the time 11-year-old Matthew was born, both parents perceived that something was wrong. The child rarely slept; his energy rarely waned. When Matthew was 3, Vigil and Stephens began debating whether to give him Ritalin, a prescription medication that helps hyperactive children slow down and concentrate.

“I was for it, Lee was against it,” Vigil recalled.

The parents researched the matter, but Stephens didn’t agree to Ritalin until Matthew was 6. Today, he acknowledges that the medicine “helps him focus in, and if he doesn’t have it, he’s just all over the place.”

All of their children are now on medication, and when the youngest one developed seizures, there wasn’t even any disagreement that the child should be treated with drugs.

“Eventually, it just came down to you have to at least try,” Stephens said.

Although Vigil says the disagreements strained the marriage, she and her husband managed to bridge their differences on their own.

Other parents are helped by members of their child’s medical team--or by educators and psychiatrists familiar with the case--who sit them down individually and together in search of shared points of view. In each instance, the outside party tries to find common ground and work from there.

Working for a Solution

Dr. Hans Steiner, a psychiatrist and Stanford University professor, takes into account both parents’ roles in the child’s life and how those roles shape their perceptions of the child.

In families with stay-at-home mothers, Steiner says, the mother typically is a better judge of the child’s behavior than the father, because she spends more time observing the child.

“The conflict plays itself out with the mom saying, ‘He’s getting worse.’ The father says to me, ‘He’s pretty much the same.’ The mom says, ‘You’re never here when he has these temper tantrums,’ and the father says, ‘That’s because you don’t manage him well.’ ”

In such cases, Steiner may recommend the father stay home from work a couple of days to care for the child and be exposed to what the mother sees.

To bring divorced parents into accord, Steiner appeals to their common interest in the child’s well-being: “Most people are remarkably rational even when they’re irrational. Over time, most people come around.”

Dr. Julia McMillan, a pediatrician at Johns Hopkins Medical Institutions in Baltimore, says compromise can also be forged by setting a trial period for a new treatment or medication. Once the treatment is evaluated, the parents may find it easier to agree on the course of action.

Even parents who have staked out divergent positions because of religious or cultural beliefs can come to an understanding.

Religion was the sticking point in the case of a child repeatedly brought to Johns Hopkins with complications of sickle cell anemia, McMillan recalled. As a Jehovah’s Witness, the mother didn’t believe in blood transfusions; the father was not a follower.

McMillan described the parents’ behavior as a dance: “The mother would say no. The father would say yes. And what usually would happen is the mother would give in because in her heart she wanted the child to be transfused, but her religion says you can’t give blood to another person. She could save face in her religion by saying no, but somehow her conscience would allow her to let the father overrule her,” McMillan said.

“That’s a situation in which there is a superficial disagreement, but both parents had the best interest of the child at heart.”

It’s often life-and-death cases that are the most wrenching to everyone involved. Hospital staff trying to forge consensus can find these the most grueling.

For instance, after a child has undergone multiple rounds of chemotherapy or difficult surgery and still has a poor prognosis, one parent may be reluctant to give up.

Dr. Cheryl Lew, a pediatric lung specialist who heads the ethics committee at Childrens Hospital Los Angeles, says that one parent may want to try experimental or innovative therapy because he or she feels “that a 20% or 30% potential for survival is worth putting up with all of the pain, discomfort, inconvenience and so-called burden of therapy.”

But even in those cases, “the parent who wants to forgo therapy may out of respect for his or her spouse choose to go along,” Lew said.

Lisa Pincus, a patient-relations specialist at Childrens Hospital, recalled the case of a teenage brain-tumor patient who had exhausted traditional treatments. The mother was resigned to the girl’s death, but her ex-husband wanted to try herbs as a last-ditch therapy.

The hospital obtained the mother’s consent and administered herbs in a purified form once doctors determined they could cause no harm.

Although the young woman died, “it gave peace of mind to dad,” Pincus said, to have done everything remotely possible.

Courts Become Last Resort

When all other negotiations fail in a divided family, courts can provide the final forum.

One Los Angeles mother, a school nurse with two children diagnosed with learning problems, turns to judges when her children need treatment. She said her ex-husband, whom she describes as a model father, objected to medicating the children even when they were still married. The oldest child was distracted in class and behaving badly at home. The father consistently blamed the behavioral problems on the divorce.

Eventually, a neurologist talked to the dad and showed him “where it wasn’t a divorce issue,” the mother said. Nevertheless, the mother has repeatedly relied on the courts to back her up on medication decisions.

“I had to use whatever systems were available to me, i.e., the school system, the court system . . . to help me take care of these kids and try to educate the dad,” the mother said.

Hospitals at times rely upon the courts to keep the family together.

Dr. Ann Petru, an infectious disease specialist and chairwoman of the ethics committee at Childrens Hospital Oakland, recalled the case of a father and mother who disagreed about treating the youngest of their 11 children for African sleeping sickness.

While science has shown that African sleeping sickness is among diseases transmitted through the bites of insects, the African mother’s native culture taught that children develop such illnesses because of bad parenting.

Although the father, a journalist in exile, advocated treatment with a promising new drug, the mother threatened to return to Africa with the sick child if he gave treatment consent. Signing the form was tantamount to calling her a bad mother, she said.

By getting a judge to order treatment, Petru was able to save the youngster’s life and prevent the mother from abandoning her other 10 children.

“The father, deep in his heart, wanted the child to be treated, but the only way he could get off the hook was if the decision was taken away from the family.”

Failure to Agree

Sometimes there is no resolution.

In a Northern California case, an HIV-positive boy developed behavioral problems that doctors felt should be treated with Ritalin. He got two different messages from his parents. One accepted his level of activity, while the other found it too intrusive, said Petru.

As a result, the boy receives medication at one parent’s home and not at the other’s.

Although not an optimal outcome, doctors say each dose of Ritalin works for just a few hours and there’s no major physical consequence to having it wash out of the child’s system when he’s with the anti-Ritalin parent.

In other cases, the lack of unity may lead to additional suffering of parents and children.

Social worker Madrigal said that, on occasion, one parent will decide that a dying child has been through enough, but the other parent will say that his or her religious beliefs don’t allow the withdrawal of life support.

Then out of respect and consideration for the religious practices, the hospital will allow the child to remain hooked up to machines, no matter how difficult that may be for the dissenting parent, Madrigal said.

If the tables were turned and the parental discord kept the child from receiving life-sustaining therapy that had a good chance of success, the hospital would enlist the courts.

But for the most part, health care professionals want to keep decisions about children’s care in the hands of those who know them best: parents.

“Most of us would consider it a failure of our ability to provide family care if we had to go to court to achieve a settlement,” said Childrens Hospital’s Lew.