"The conventional wisdom is that the patient (or parents) should always make the decision because that is their right and duty. We believe that is too simplistic; parents expect and need help from the clinician with difficult decisions," said Dr. Simon Whitney, assistant professor of family and community medicine at BCM.
Whitney, also an associate faculty member of the Center for Medical Ethics and Health Policy at BCM, says the most important thing for clinicians to understand is that there must be a constant dialogue between patients and clinicians. Patients look to clinicians for authority in decision making yet clinicians should know how to read, listen and explain the information so that parents thoroughly understand the options when they have to make a treatment decision.
Treatment options are complex and decisions must sometimes be made at a moment's notice. When there is one clear best way to treat the patient the physician should inform the parent and child of the one treatment option as if it is the only one, including any risks associated with the treatment.
"And in a sense, there is really no decision for the doctor or the parent if there is one best treatment for the child," said Whitney. "The decision has essentially already been made."
There are different reasons why the clinician, the child or the parent should take the lead role in the decision making and depends on each child's circumstances.
"The role of the decision maker in pediatric oncology cases is determined based on disease-related and treatment-related questions that must be answered," said Dr. Stacey Berg, professor of pediatrics - hematology and oncology section at BCM and pediatric oncologist at Texas Children's Cancer Center. "Whether the disease is curable and how many treatment options are available are very important in determining who should take the lead in decision-making."
When there are two treatment options that have similar risks and benefits to the child, the clinician has the obligation to inform the parent and child of both options, including all risks and benefits of each. It is in this situation that the parents have the option of deciding what is best based on the information they receive from the clinician.
"In this situation the clinician and the family both have a role in the decision-making," said Whitney. "The clinician informs the patient of all options and lets them make the best decision based on their understanding of the information presented to them."
Conveying information in simple and clear language leads to better decision-making. When parents understand they are more likely to have an opinion. Clinicians should also explore what matters to the patient to make it easier to help make the decision.