Your Child Needs the Hospital? 12 Tips for Parents

No parent anticipates that a child will have to contend with illness, hospital stays, surgery, or the nasty side effects of medical treatment. But more than 5 million children have a chronic condition, from diabetes to a congenital heart defect, that limits their activity and generally requires medical attention. Children undergo more than 2 million inpatient procedures and nearly 20 million outpatient procedures annually, according to the Centers for Disease Control and Prevention. And nearly 22 million visits a year bring panicked families to the ER, says the CDC. In other words, Mom and Dad, there's a pretty good chance your child will interact with the hospital system.

Finding (and choosing) the right doctor, care team, and hospital requires parents to roll up their sleeves and do careful research, pressing doctors and nurses for answers to tough questions. "No matter how good the physician is," says James Mandell, a surgeon in pediatric urology and chief executive officer at Children's Hospital Boston, "there is nobody that is more committed or interested in that child's care than you." Here are 12 tips for parents seeking the best pediatric hospital care:

1. Seek out a children's hospital. There are approximately 5,000 hospitals in the United States, and fewer than 150 have comprehensive depth of expertise in kids' medicine. Yet most experts will still tell families to find a children's hospital, should a son or daughter ever need care. Why? Because pediatric medicine is not simply a miniaturized version of the treatment an adult would receive. "Everything is different," says Mandell, from having the appropriate—and correctly-sized—equipment on-site to how a child's vulnerability to disease differs from older patients'; more so than with adults, "there is a very small window between being 'OK' and 'not OK.' " Many experts believe that certain routine care performed in an adult hospital that has a lot of experience with the procedure in kids is reasonable and safe. But there are gray areas, and some draw the line between an adult hospital and a children's hospital at the need for anesthesia—be it for surgery or to get an imaging test like an MRI. Anesthesia is probably the most important consideration, Mandel thinks, because "kids are so vulnerable to changes" that are in the purview of the anesthesia team. For example, a baby can go into cardiac arrest just from being too cold, he explains; not only does the anesthesia team deliver drugs, it monitors and controls a patient's temperature, oxygen levels, blood pressure, heart rate, and fluids, among other things.

[See America's Best Children's Hospitals and search for one near you.]

Pediatric experts agree that certain areas of care are nonnegotiable: When a diagnosis is complicated, for example, or an illness is particularly severe. For Stuart Siegel, a hematologist-oncologist and director of Childrens Hospital Los Angeles's Center for Cancer & Blood Diseases, working among a team of pediatric specialists is absolutely critical to delivering top care to his young patients. For example, the pathologist who scans a tumor for the presence of cancer in a child must be adept at reading subtle patterns that differ considerably from those in adult cancers—a task he trusts only a pediatric pathologist to do. Indeed, Siegel has seen many patients who were initially misdiagnosed by adult specialists, for example, as having non-Hodgkin's lymphoma when they actually had Hodgkin's—separate diseases with distinctive treatment protocols. "Across the pediatric spectrum," he explains, "the majority of times there are unique aspects [of the disease in a child] that will be missed by an adult specialist or generalist."

2. Learn the disease and how success is measured. Not every condition is curable. Understanding the language and scope of your child's condition—say, that juvenile arthritis is often measured in terms of the number of pain-free days and range of motion in the joints—can help you assess not only your kid's well-being but also how well the care team is performing. Sure, becoming well versed in your child's illness can feel daunting. Start with questions, and be persistent.

"I didn't know anything until I had to," says Lynnie Reid, of Dorchester, Mass., "but when your child has persistent chronic disease, you never stop." Of her five children, two have a rare form of sickle cell anemia and one had severe asthma growing up. Her children have all eventually gotten their care at Children's Hospital Boston, where she is now co-chairing the Family Advisory Council. In fact, the knowledge Reid acquired through her 15-year-old son Amiel's experience with sickle-cell anemia lead her to push for better care for her 32-year-old daughter, Damali, who has the same rare form of the disease. An experimental treatment that Amiel got through a clinical trial at Children's, which involves chemotherapy though he does not have cancer, has helped him tremendously, says Reid. So she pressed Damali's care team at Dana-Farber Cancer Institute to hire a nurse with the specific training to offer the protocol. She went through the proper channels and arranged a conference call between her children's doctors to bolster her pitch. Her formula? "I just pushed and pushed," she says.

3. Don't just rely on Google for an understanding of what you face. A new diagnosis often has parents searching online like mad to decipher what their child, and the family as a whole, will need to handle. Much information—trusted and otherwise—can be found online, but your computer isn't the only source. Children's hospitals commonly have Parent and Family Resource Centers that can be incredibly useful, says Beverley Johnson, president of the Institute for Family Centered Care. Staff that point parents in the direction of disease- or treatment-specific literature and research means not having to wade through the online morass.

4. To get an appointment with an elite specialist, enlist the pediatrician. Though nothing bars family members from calling a top-notch specialist's office to get an appointment, your child will likely be better served if the pediatrician works the system on his or her behalf. "That's the easiest way to get in," says Maria Britto, pediatrician and director of the Center for Innovation in Chronic Care at Cincinnati Children's Hospital Medical Center. That's true even if the two doctors don't know one another, she adds. The pediatrician will pass on details of your child's medical history, physical exams, diagnostic work done up until that point, and also have a conversation about the urgency of the case. Families should also be aware that getting an appointment with a world-renowned "super specialist" might actually mean seeing one of the fellows training in that person's office. "You might get the last five minutes of the appointment with the famous doctor," explains Britto. To avoid frustration and heartbreak, ask exactly who your child will see and what role the sought-after specialist will play when booking the appointment.

5. Ask about volume and quality measures, but also about the depth of the care team. Yes, high praise from a co-worker's sister whose child had the same condition matters. But numbers are very important tools in deciding where to have your child treated—so don't shy away from asking about the data. Generally speaking, an important gauge of a doctor's or hospital program's worth is high volume. The more similar patients treated, the better. In adult medicine, such numbers are relatively accessible—in part because adults tend to have more surgeries and treatments overall than kids do, and because Medicare collects much of the data. In pediatrics, however, robust volume data tends to be available only in certain areas like cancer, organ transplantation, and cystic fibrosis, says Britto. So while "volume is still a reasonable thing to ask about" in pediatrics, she explains, "You can't hang your hat on it." This is because a good number of children's procedures and treatments have relatively low volume altogether, making it difficult for a family to go on volume alone.

Therefore, parents will need to dig deeper. Ask how the hospital tracks its own success in treating your child's disease—the important outcomes, the complications to avoid, and how their record compares with that of other centers. "If they can answer those questions, that's a good start," adds Britto. For example, with severe asthma, what percentage of patients end up having to be admitted to the intensive care unit, need to be intubated, or get serious cardio-respiratory treatment? Or in a heart surgery, what is the infection rate and what percentage of kids can play without limitations after healing from the procedure?

Quality is not fully measured solely by the numbers. Do they have a comprehensive team dedicated to the disease or procedure? This means not just having specialist physicians, but nurses and therapists to support the team and family post-surgery or over the course of treatment. Ask how a team would coordinate care, for example, when a child needs airway reconstruction, say, because they have residual damage from being on a ventilator as a baby. Not only is an ear-nose-and-throat surgeon integral to the procedure; so is a consulting gastroenterologist, a speech therapist, and a feeding specialist. Understand who is involved and how they create a treatment plan.

6. Find out about satellite locations. Traveling to a major metropolitan area—where the majority of the nation's top hospitals are located—is not the only way to get access to their care. Many of the best children's hospitals realize their reach is somewhat limited, so many offer appointments, and often treatments, at offices and community hospitals deep in the suburbs or in rural areas. While families regularly travel great distances to get the best care for their children, such upheaval can exact a severe toll. "Even 50 miles can be debilitating to a family socially and economically," says Siegel. Childrens Hospital Los Angeles, for example, has had a full-time hematologist-oncologist stationed at a community hospital in Ventura, Calif., about 60 miles from L.A., to provide both inpatient and outpatient care. But, says, Siegel, the necessary support staff is lacking in such settings, so depending on the severity of your child's case, travel may be required.

7. Seek out advocacy groups. Many foundations and disease-specific advocacy groups have grown up around the need for families and clinicians to engage about research funding, public policy, and clinical questions. But be aware that not all groups are created equal; some are influenced greatly or funded by drug companies. The National Organization for Rare Disorders keeps a list of some 2,000 condition-specific patient groups that it considers trustworthy to which it refers families and individuals. They "cannot be political," says Stefanie Putkowski, registered nurse and clinical information specialist at NORD. "They're vetted by us."

8. Get help from other parents. But start slowly and get your bearings first. Families reeling from a brand new diagnosis may want to hold off before contacting parent groups or getting involved in online message boards. "You have to get savvy first," says Britto, who suggests getting some baseline knowledge—from your child's pediatrician, say, or trusted academic websites. This way, says Britto, you can gauge whether the experiences shared by families online are extreme or typical.

Once you're ready, reach out. Connecting families who have children with the same rare disease is "one of the best things we do,"saysPutkowski. Not only is some of the isolation alleviated, but valuable information may be shared, from an experimental treatment option to the name of that needle-in-a-haystack specialist with an interest in the rare disease. Another resource is Parent to Parent USA, which matches families with shared experience.

9. Find the services for your whole child. To a far greater extent than medicine practiced in adults, pediatrics must consider a young patient's stage of development. In adolescents, for example, there is a set of unique developmental concerns that are separate from the disease but must be tended to in order to ensure their wellbeing and cooperation in their care. "Their sexuality, plans for education, social interactions—they usually have complex relationships with their parents at that age—all those things need to be taken into account," Siegel stresses. Adult specialists and hospitals don't necessarily have the training or resources to address the range of developmental needs in young patients.

Find out what is available. Children's hospitals regularly offer services including tutoring, visiting musicians and dogs, social workers, and child life specialists, who are trained to tend to emotional and developmental needs of the child, parents, and siblings. Lynnie Reid, who has had considerable experience over the years with the ups and downs of pediatric care, has the utmost admiration for the child life specialists at Boston Children's Hospital: "I think they're begotten, not made. They are able to bring my kids out of the space of identifying with the illness and remember they're a kid."

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.