“The child has not been on the radar as a recognized decision-making agent,” Carnevale said. “I’d like to see a paradigm shift from adults making decisions about children as moral objects to seeing children as moral subjects with their own insights and perspectives on what’s right and wrong, what’s just and unjust, and what’s good and bad.”
While he doesn’t view children as independent decision makers he says physicians and parents have an obligation to provide them with information adapted to their understanding in an attempt to solicit their “willfull cooperation” in a treatment plan.
“We have a tendency to underestimate children’s capacities to participate in decisions,” Carnevale said. “Those decision-making abilities can develop better in children if we engage them earlier on, and children appreciate having a say about their treatment plan.”
Carnevale said professionals tend to overestimate or underestimate the burden of a particular treatment for youth. For example, he spoke about a 4 1/2 year old girl on long-term ventilation who viewed her pap machine in the same way as an adult might view eyeglasses. “She called it ‘her pap’ and she likes it and is happy it made her feel better.”
On the other hand, he spoke of a 15-year-old teen who opposed having a defibrillation device implanted in his chest because the resulting bump would harm his body image.
By tailoring information to different levels of understanding and listening to the child’s wishes, we communicate an “underlying respect for the child’s dignity,” Carnevale said.
This is important whether or not the child has a developmental disability or can verbalize their wishes, he said.
Carnevale was speaking during a town hall that was moderated by Dr. Brian Goldman, host of the CBC show White Coat, Black Art.
Dr. Margaret Lawson, a pediatric endocrinologist at the Children’s Hospital of Eastern Ontario, echoed the importance of children and parents to healthcare decision-making and said “families are the most underutilized resource."
She spoke of a shared decision-making model in which two-way communication occurs between two experts: the doctor and the family. “You need expert knowledge about the condition... and you need to know how the family feels about risk and what their preferences and values are.
Lawson said a decision tool developed at CHEO “helps take families through the process of making an informed decision that is consistent with the family’s values.”
This includes identifying treatment options, benefits and harms, and the family’s values, including which benefits and harms matter the most to them.
Dr. Lawson emphasized that patient engagement is not just ‘parent’ engagement and the child’s voice is essential.