November 7, 2003

Ethics Grand Rounds explores the child’s role in medical decisions

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L to R: Dr. Catherine Fuchs, Dr. James Whitlock, Dr. Kevin Chruchwell, Dr. Jan van Eys and Dr. Ellen Wright Clayton particpated in a panel discussion about the child’s role in the medical decision-making process at the Ethics Grand Rounds Tuesday. Dana Johnson

Ethics Grand Rounds explores the child’s role in medical decisions

When it comes to children and medical decisions, who gets to decide? And what role does the child play in this decision process?

These questions spurred conversation at the Ethics Grand Rounds on Tuesday, but remained unanswered. Medical professionals and ethicists voiced different viewpoints, but reached no consensus on the issue of how much power a child should have in medical decision-making.

Dr. Ellen Wright Clayton, professor of Pediatrics and Law and director of Genetics and Health Policy, began the discussion by outlining where the law stands on the issue of children and choice in medical treatment.

“Children do not get to make legally-binding health care decisions,” Clayton said, noting the exceptions of emergency situations, drug abuse, pregnancy and other similar circumstances. “The parents have the decision making power, unless their decisions are harmful, abusive or neglectful to the child.

“But the reality is, neither of these points accurately describe what the issues actually are.”

Dr. Jan van Eys, retired division head and chairman of Pediatrics, at M.D. Anderson Medical Center, argued a child can make a choice when it comes to health care, and that this choice should be sought out and honored.

“We commonly think it is not proper for a child to answer questions regarding their medical care or research,” van Eys said. “But knowledge is a small part of these decisions. And parents cannot truly put themselves in the place of the child.”

If a treatment is absolutely necessary for the child, van Eys recommended that physicians should not ask a child, but tell them what needs to be done.

“Tell them to trust you, but only if you are trustworthy,” he said.

Clayton outlined the role of the physician in the decision-making process, specifically when a child and parent disagree about treatment options.

“A doctor needs to prescribe drugs or treatments, so the doctor still has a part in the decision,” she said. “You, as a doctor need to decide, and you have to be careful not to do the wrong thing.”

Dr. Jayant Desphande, medical director of Performance Management and Improvement, felt a doctor’s role starts even before approaching the child and parent.

“I have a decision to make before going to a parent or child,” Desphande said during the audience comment portion of the event. “The doctor should have decided already what is the best thing to do. If a treatment is wrong, he should know before going in to talk to a child and parents, and that treatment should not be an option.”

But he placed the responsibility for the child on the shoulders of the parents.

“Children should be included in decisions,” he said, “but not as decision-makers. There are things that have to be done, and as a parent, it is my responsibility to see that they get done.”

Though there was no agreement on the role of children and parents in the decision-making process, one conclusion seemed unanimous among the medical professionals and ethicists, medical professionals must communicate with both the parents and the child and help them come to make decisions together.

“The majority of the time a medical professional needs to sit with parents and the child and talk,” said Dr. James Whitlock, associate professor of Pediatrics and director of Pediatric Hematology-Oncology. “Often they can get both parties on the same page through education and dialogue.”