Parents of children with serious illnesses often have mixed emotions fluctuating from happiness, pride, and joy to concern, fear, and anger. Add in the stress of running back and forth from the hospital, potentially trying to attend work, and taking care of other children in the family. During such tumult, how do parents concentrate on making difficult medical decisions on behalf of their children?
For more than a decade, Chris Feudtner, MD, PhD, MPH, pediatrician, epidemiologist, and ethicist at The Children’s Hospital of Philadelphia and professor of pediatrics, medical ethics, and health policy at the University of Pennsylvania, has researched how parents of seriously ill children make healthcare choices. He realized that in parallel to thinking about what is the best thing to do medically for their child, parents also place great importance on certain core duties that they believe they must fulfill in order to be a good parent for their child.
“We focus so much on the disease problems that the patient has, but we have largely neglected the inner work that the decision-maker is doing, which ultimately may be the most decisive element,” Dr. Feudtner said. “At the end of the day, parents have to feel that they did the right thing.”
In a study supported by a National Institutes of Health grant that was published early online in JAMA Pediatrics, Dr. Feudtner and colleagues reported on an experiment they conducted that used an innovative discrete-choice method to help them better understand how 12 good-parent beliefs potentially influence medical decisions. The discrete-choice technique often is used by marketing researchers who want to determine the product characteristics that are most important to customers.
Two hundred parents of seriously ill children participated in the study. From groups of four choices, the parents picked one attribute that was most important to them and one attribute that was the least important. Using software to analyze the responses, the researchers identified four sets of duties that the parents embraced:
- making sure my child feels loved (68 parents)
- focusing on my child’s health (56 parents)
- making informed medical care decisions and advocating for my child (55 parents)
- focusing on my child’s spiritual well-being (21 parents).
However, the results also revealed that parents’ views of specific attributes were diverse, which demonstrates a key point that the researchers emphasized in the JAMA Pediatrics article: “There is no single right way to be a good parent to a child with a serious illness.” They suggested that clinicians use the study’s findings to tailor their conversations with parents and provide more effective decision support by framing medical choices in ways that are most pertinent to parents’ individual aspirations.
“In supporting parents as they grapple with how to make medical decisions for their child, clinicians need to talk about the medical care that the child might receive, including the pros and cons of any particular course of action,” Dr. Feudtner said. “But they also need to talk about how the parents are feeling about themselves in trying to make these decisions.”
The study’s authors offer some practical guidance for clinicians on how to deepen these conversations with parents during clinical encounters. For example, asking, “What do you feel you need to do to be a good parent to your child?” puts the issue squarely on the table and shows parents that the clinician wants to help them in their quest to be the best parents that they can be during a difficult situation.
“We think that more frank, compassionate discussions will help families with issues that range from post-traumatic stress, to bereavement if the child does not survive, to recovery of the family if the child does improve and goes home, so that they are able to carry on in a healthier manner,” Dr. Feudtner said.
Future research projects that Dr. Feudtner is involved in will focus on how to help parents handle the stress and strain of having a child with a serious illness. He currently is seeking funding to support pilot testing of a coping kit that offers seven interventions for parents to choose from depending on their personal circumstances.