10. Expect your doctor to ask peers for advice. Pediatric medicine is an incredibly small world. And with tough cases, top specialists zip images and lab results around the country (and the world) to get perspective and guidance from colleagues at different centers. "I think families should feel encouraged" about the practice, adds Mandell, who has over 30 years experience in the field and says he routinely consults with the 11 specialists on his team in Boston—but also with the other 225 or so pediatric urologic surgeons nationwide. Ask your doctor if she has consulted with peers—including with the top specialists nationwide—and keep antenna up for resistance. If there is pushback or your inquiry is batted aside, he says, "That's a very important signal."
11. Consider a clinical trial. Many diseases simply aren't well understood. And one of the best ways to access the best care is to participate in a clinical trial. Not only are trials conducted at the preeminent centers, but much of the time, says Siegel, "the very best treatments come in the context of a clinical trial, which is generally trying to improve on the best current treatment." The rigor involved in these trials—should your child be randomized into either the experimental group or into the control group that gets standard treatment—means that less-than-optimal care is almost guaranteed to be eliminated, he explains.
But don't expect your child's primary care provider to be familiar with every trial being conducted nationwide. Parents may need to be proactive, particularly if their child has a rare disorder. The good news is, any trial receiving funding from the government—and often those that are not—must be registered on clinicaltrials.gov, which is easy to search. Also know that if your child is getting treated at an academic center, research is being conducted and it's commonplace for all comers to be invited to participate as research subjects. But families shouldn't feel pressured to sign their child up for a trial. "Be prepared to be asked," says Britto, but "know that [participation] is absolutely optional."
12. Demand—nicely—to be included in treatment decisions. The family's involvement is absolutely critical to the process of delivering first-rate care. That's a statement not every doctor or child's family is used to accepting or enacting, but parents know their child better than the most skilled of clinicians. "You are not a visitor in a hospital, you're an ally for quality and safety," says Johnson. Playing such a role does not have to be adversarial, she explains, and families should make every effort to engender trust and respect, but should also expect the same from the care team.
Johnson recommends telling the staff you want to participate in bedside rounds, where doctors and staff gather to discuss the child's status, including new lab results, overnight events, and a plan for the day, for example. Research in an April issue of the journal Pediatrics found that families who participated in "family-centered" rounds—the patient and the family were asked to give input, volunteer changes, and ask questions—impacted medical decision-making in 90 percent of cases. And staff reported having a better understanding of the patient's medical plan, feeling better able to help the families, and having a greater sense of teamwork. Johnson suggests that families should also ask to participate in—and plan their schedule accordingly—nurse shift change reports. Handoffs between medical staff are notoriously high-risk times because information is not always transferred correctly. Some hospitals allow families to summon their Rapid Response Team—a designated group of clinicians with critical care expertise—without going through a nurse or doctor. In a scenario in which a child's condition is rapidly deteriorating, a family member sitting bedside might notice subtle clue like lethargy that could indicate an oncoming emergency like cardiac arrest.
And parents aren't the only ones who should be involved. Expect your child to be included, too—particularly those who are facing an ongoing condition. "At the appropriate developmental stage—a 3-, 4-, or 5-year old should begin to be part of the conversation," says Britto. This means an age-appropriate explanation of what is happening and why. She also believes kids should start to be involved in decisions about their care—even simply deciding which arm they would prefer a shot in.