When You Need the Best
As May waned, doctors in Lafayette, Colo., huddled to discuss 3-day-old Maxwell's clean diaper. Why wasn't his digestive tract functioning? The newborn was whisked 20 miles to Denver, where David Partrick, a surgeon at Children's Hospital, took a series of tissue biopsies. The tests showed that most of the specialized nerve cells that push the intestinal contents downstream hadn't developed beyond the first foot or so. Maxwell's small and large intestines would never work normally.
But Maxwell was luckier than many of the 1 in 5,000 babies born with Hirschsprung's disease. Ranked No. 7 in pediatrics this year (Page 136), Children's is a top-flight hospital. Its resources include a chief surgeon, Mory Ziegler, who counts Hirschsprung's among his interests. Partrick has treated 60 or more cases. To places like Children's, figuring out how to cope with such conditions is routine, if such a thing is conceivable. Partrick cut free the far end of the small functional piece of intestine and connected it to an opening in the abdomen, or stoma, to discharge waste. Maxwell will spend at least his next several months in neonatal intensive care, nourished through an IV tube while Partrick tries to wean him at least part of the time to a feeding tube snaked into his stomach. Ultimately, he may be put on the list for a total intestinal transplant. "It's not what we envisioned for Max," says his father, Randall O'Reilly, a psychology professor at the University of Colorado-Boulder, "but we're hopeful he'll have a rich and fulfilling life."
The several hundred institutions atop medicine's highest rungs go by different names--tertiary-care hospitals and referral centers are two. Most provide their communities with basic hospital care. But their real worth, because almost all of them are involved in research and teaching, is that they study, diagnose, and treat tough cases like Maxwell's every day--drug-resistant infections, intransigent pain, pancreatic cancer, abnormal heart rhythms.
"Tough" doesn't have to mean rare or hard to treat. It can mean an approach or technology is required that is unavailable at most local hospitals, such as zapping a brain tumor with radioactive beams from different directions or replacing a knee using small incisions instead of open surgery. As physicians absorb new methods and technologies, what is tough today may become near ordinary tomorrow. It wasn't so long ago that having heart bypass surgery in a community hospital was unthinkable, but now that's where roughly 40 percent of these operations are performed. Here are a few examples of times when extra medical firepower might be worth seeking.
A CHILD NEEDS TO BE HOSPITALIZED
As medical students learn early on, children aren't miniature adults. Their immature bodies metabolize anesthesia--all drugs, in fact--differently, with less room for error, so doses need to be carefully calculated and administered. Working on tiny veins and organs is harder and injuring them easier. Tools have to be scaled down. Medical routines, or protocols, that govern how certain conditions should be treated are not written the same for children as for adults. "Wilms' tumor, a cancer of the kidney in a young child, is managed totally differently from cancer of the kidney in an adult," says Ann Kosloske, recently retired from a long career as a pediatric surgeon at many academic centers.
Top pediatric facilities bring a large, child-focused team to the table. "There are some spectacular community hospitals," says Ziegler of Children's Hospital, "but it's unlikely that most of them have a complete pediacentric support system--the anesthesiologist, the social worker, the play therapist, people who are expert at drawing blood from children, labs that can work with very small amounts of blood."
This argues that parents should seek a top hospital even for a child's overnight stay, says Peter Pronovost, medical director of the Center for Innovation in Quality Patient Care at Johns Hopkins University School of Medicine. "If a problem or procedure is big enough for a child to be admitted," he says, "it's big enough to look for the best possible hospital." That's a little extreme for Kosloske, the first pediatric surgeon in New Mexico, where following Pronovost's advice easily could mean driving hundreds of miles.
But it's not all that different from referral guidelines issued in 2002 by the American Academy of Pediatrics. They advise primary-care doctors to refer all children from birth to age 5 who need operations not to general surgeons but to pediatric surgeons, who have special training. All children, period, should go to surgeons with relevant pediatric expertise for a long list of specific conditions, such as removing the tonsils of a child with heart problems or correcting undescended testicles. There are fewer than 1,000 board-certified pediatric surgeons in the country, and they work mostly at large tertiary-care centers where their skills are constantly in demand. But having a local general surgeon take on a difficult condition and then recognize the need to refer the child to an advanced center "isn't in the child's best interests," says Kosloske, who directed the final polishing of the AAP recommendations. "It's better to get them where they need to go right away." The guidelines are publicly available (aappolicy.aappublications.org, click on "AAP Policy Statements") and can be inspiration for questions to ask a pediatrician.
A PATIENT IS HIGH RISK
The standard treatment for smokers in the late stages of emphysema, when most are too debilitated even to get around, is simply to ease their physical distress by giving them supplemental oxygen, inhalers, and other drugs. Many patients never hear about an option called lung volume reduction surgery that might actually restore some quality of life. Their primary-care doctor may not know about the treatment, which is done at only a handful of medical centers. And lung-care specialists might not bring it up. Says pulmonologist Philip Diaz, medical director of lung volume reduction surgery at the Ohio State University Medical Center in Columbus: "They may figure the person is untreatable--why put them through surgery?"
People with late-stage emphysema don't make good surgery candidates. Their damaged lungs have left them with little strength or stamina. Most have a higher-than-usual chance of a heart attack or arrhythmia during surgery because of high blood pressure or heart disease. Yet, when the disease is concentrated in the upper part of the lungs, removing those portions may bring enormous relief.
Indeed, many people who need treatment but are at high risk for a poor outcome are apt to be turned away by their local healthcare system. Meantime, the country's best hospitals are constantly devising ways to overcome medical handicaps such as old age and obesity, the latter a real and growing concern.
Not long ago, for example, advanced years were an automatic disqualifier for big operations, and many surgeons still are uncomfortable working on people above a certain age. But physicians have developed ways to cope with fragile tissue and bone, and elderly patients have shown themselves to be quite resilient after the insults of surgery. At large referral centers, even nonagenarians now roll into operating rooms at a steady pace.
Obesity needn't preclude treatment, either, but it's a reason to look for expertise. Penetrating thick layers of fat and keeping far more blood vessels than usual from turning into bleeders add to the time spent under anesthesia, itself a risk. And a drumbeat of studies demonstrates that obesity worsens the outcomes of many procedures. Findings released in May, for example, show that abnormal heart rhythms were 61 percent more likely after radio-frequency ablation, a corrective treatment, in patients with a body mass index above 30 (indicating obesity) than in those whose BMI was normal. Next month, the journal Cancer will report that obese patients with prostate cancer who are treated with radiation are two-thirds more likely to have a recurrence than those who aren't obese.
One important job of the experts is to figure out which vulnerable patients can't be helped. A long list of potentially dangerous complications--infection, collapsed lung--faces candidates for the lung volume reduction operation, for example. A team of specialists is needed, just as it is with transplant surgery, to screen out the highest risks, identify the patients most likely to benefit, and work with them after they recuperate to keep up their gains. At Ohio State, which recently became the first hospital to meet specific new standards for lung volume reduction programs set by the Joint Commission on Accreditation of Healthcare Organizations, 75 percent to 80 percent of those who come seeking care are rejected.
Sandra Lecraft of Coshocton, Ohio, made it through the screening. Housebound and barely able to walk 100 feet, she had been using oxygen tanks 24 hours a day. The payoff was immediate. "I woke up in the ICU and said, 'I don't feel like there's somebody sitting on my chest,'" says Lecraft, 63. Out went the oxygen tanks. Lecraft now walks 3 to 4 miles four times a week, rides an exercise bike twice weekly, and occasionally swims.
ICU TIME IS A POSSIBILITY
A serious case of pneumonia or heart failure, say, or a complex surgical procedure such as the removal of part of a cancerous organ is most likely to mean a day or more in an intensive care unit. If there's time to make a choice of hospitals beforehand, a large center could be your best shot at being cared for in an ICU run by trained, certified intensivists.
Patients in ICUs are the sickest of the sick--many are breathing with the help of mechanical ventilators, and all are closely monitored 24 hours a day. At most hospitals, they are under the care of the doctor who admitted them--most often a surgeon in the case of a stubborn post-op infection, say, or an internist or other primary-care physician. Few of these physicians are trained to treat critically ill patients.
Intensivists are. They're expert, for example, at staving off lethal infections, stabilizing an erratic heartbeat, and catching potential drug interactions. An eye-opening analysis in 2002 by Johns Hopkins's Pronovost and others found that patients are almost 40 percent less likely to die in ICUs supervised full time by these specialists. Yet only about 20 percent of hospitals--most of them referral centers--have intensivist-directed ICUs.
An intensivist-run ICU is so valuable, Pronovost believes, that it more than cancels out the disadvantage of going to a hospital that doesn't see a large number of patients with a particular condition. Not having intensivists "is part of the invisibility of poor quality," he says. "No hospital is going to tell you your father died because he didn't have an intensivist--they'll say it was pneumonia or a blood infection or something else."
A TECHNOLOGY IS NEW
An implanted titanium apparatus relieves breathing and heart problems for a child with a severely deformed chest and spine. MRIs during surgery indicate whether cancerous tissue has been completely removed. Without treatment, a carotid aneurysm--a weakened, bulging spot in one of the arteries to the brain--kills more than 70 percent of its victims. Surgery to reinforce the artery or to tie off the bulge can damage nearby nerves, risking death or major stroke. But a new, less drastic alternative pushes a mesh cylinder through a catheter to the aneurysm. The "stent graft" isolates the aneurysm and reinforces the artery walls. Only at referral centers are such technologies tested and refined, and until they are, only at such centers will patients be able to exploit them.
Bobbie Nuhfer's good fortune was to find such experience near her home in Orlando. From the time she was a young girl in West Virginia, Nuhfer, 62, had been passing out briefly, sometimes twice a week. Her own children "knew if I reached out and grabbed hold of them, they were to set me down easy," she says. In 2003, a cardiologist found the explanation: an atrial septal defect--a hole between two chambers of Nuhfer's heart that was short-circuiting oxygenated blood.
Nuhfer could have had open-heart surgery. But she'd been told about the recently approved Amplatzer septal occluder, which was pushed through a catheter to seal the hole. The year before, a study of the repair had put the rate of major complications at 1.6 percent, compared with 5.4 percent for open-heart surgery. Evan Zahn, chief of cardiology at Miami Children's Hospital's congenital heart institute and one of the few doctors familiar with the plug, took her on and installed the device. "I have not fainted once," she says, since seeking out the treatment she considered best. "Minor surgery is what they do on you," says Nuhfer. "Major is what they do on me. And I wanted minor."
This story appears in the July 17, 2006 print edition of U.S. News & World Report.