Making medical decisions can be overwhelming when families must figure out the “best choices” for their child who may have special healthcare needs or developmental disabilities. Some families may rely on their clinicians to make these important decisions for them, in a paternalistic “father knows best” way. Other families may see themselves as consumers and carry strong opinions about a certain treatment approach they came across yesterday on the Internet. Recognizing that physicians must navigate such a wide variation of family values, expectations, and priorities, Susan Levy, MD, MPH, a developmental pediatrician and researcher for the Center for Autism Research at Children’s Hospital of Philadelphia, co-authored an American Academy of Pediatrics (AAP) clinical report on behalf its Council on Children with Disabilities to provide a framework for the implementation of shared decision-making.
This topic is near and dear to Dr. Levy’s heart, whose public health master’s thesis focused on treatment decisions for children with autism spectrum disorder. She and her collaborators recently published their findings from a qualitative study that describes some of the barriers to practicing shared decision-making in this patient population. We chatted with Dr. Levy, who also serves as chair of the Council of Children with Disabilities’ autism subcommittee, to better understand how the principles of shared decision-making can promote family and clinician collaboration to improve pediatric health and satisfaction.
How do you view shared decision-making, and why is it especially important for complex groups in pediatrics?
One of the things I’ve found in my research, is that many pediatricians think they’re engaging in shared decision-making, but it isn’t truly shared. And many parents don’t understand their role in shared decision-making. So I’m hoping this clinical report will help to set the stage and give pediatricians the tools to begin these conversations, which are really important for children with special healthcare needs because their evaluation and treatment decisions can be very complicated and not straight-forward. There may not be one best or evidence-based answer, so it’s important to establish communication and a process that incorporates both provider and family values and needs. The ultimate goal is to include the families in the decision-making process and make it an informed partnership to support the child’s well-being.
If you could use three words to describe the shared decision-making process, what would you choose?
Collaborative. Equitable. Family-centered.
Those may sound easy to achieve, but conducting shared decision-making doesn’t always come naturally. Can you describe how a shared decision-making conversation could help to overcome “sticking points” in making a difficult decision with a family?
When we wrote the report, we used case examples from my co-author and my experience and practice. Let’s suppose I’m sitting down with a family of a child who has been newly diagnosed with autism. The parents are uncertain about what kind of treatments to begin with, which is good opportunity for a reciprocal discussion using the principles of shared decision-making.
I’d start with a question like, “Are there any treatments that you’d like to talk about?” We’d discuss the benefits and harms so that they can make the best treatment choices for their child. A potential source of friction is when families want to use unproven treatments that have the potential for danger. So I’d check to make sure their knowledge about the possible treatments is appropriate and also ask what opinions they’ve heard from other family members and friends. Then I could say, “I have some information about some of these treatments and would be glad to talk with you about their pluses and minuses and your expectations.”
The next part of the process is to help them arrive at a decision by asking questions such as, “What are your thoughts?” and “How would you like to proceed?” or provide more information if they need time to think about the treatments. It’s a lot of steps, so it can be daunting to use shared decision-making in the primary care setting when a routine visit may be only 12 to 15 minutes. Clinicians may need to bring families back for another visit to focus on specific things that are important to them.
Was there anything unexpected that you learned about shared decision-making, as you researched and wrote the AAP report?
Working with my co-author, Richard Adams, MD, who works at the University of Texas Southwestern Medical Center and Texas Scottish Rite Hospital for Children, I learned that many tools such as decision aids are beginning to become available to help providers and families implement and evaluate the effectiveness of shared-decision making. One of those toolkits is available online through the Agency for Healthcare Research and Quality, and we give some other examples in the report.
Looking down the road, five years or so from this report’s release, how do you expect it will have changed conversations with pediatricians, families, and young patients?
Hopefully, it will be a game-changer. We will move from the extremes of paternalistic or consumerism decision-making to foster more frequent discussions and sharing of information, perspectives, and respect for choices.
Why is it important for researchers to further investigate share decision-making?
This is a great field for research. More qualitative studies need to be done to find out how people feel about shared decision-making and how it could be done better. We need to do quantitative studies as well to find out who is using it, how is it being used, and how effective it is. Now that there is some preliminary research and some data available about implementing shared decision-making in pediatrics, we need to push ahead and figure out the best way to make this a standard of care. It may be hard to do, but we’re already making slow and steady progress. This clinical report is a first step.
Find the full report, “Shared Decision-Making and Children With Disabilities: Pathways to Consensus” here.