By Susan Brink
Los Angeles Times | Posted: Wednesday, July 23, 2008 12:00 am
Every day, doctors and hospitals deliver healthy babies, jump-start stalled hearts and find cancer when it's still curable. The wonders of medical care, whether delivered within a sprawling urban campus or a tiny rural clinic, have become routine.
Yet some patients need care that not every hospital, or physician, can supply. They have a disorder so rare that few doctors have seen it, and only a handful possess expertise in treating it. Or they face results so bleak from standard treatment that they're willing to search for a doctor who has pioneered an approach not yet part of the medical mainstream.
"It's patently obvious to me that some places are better than others in delivering health-care services, just as some places are better than others at getting your car repaired," says Dr. William Roper, dean of the medical school and chief executive of the health-care system at the University of North Carolina.
People with financial resources, national standing and a network of well-connected advisers can easily get themselves to an outstanding doctor or hospital. Democratic Sen. Edward M. Kennedy, who was diagnosed with malignant glioma, a cancerous brain tumor, left Massachusetts to have surgery at Duke University Medical Center performed by an internationally renowned neurosurgeon.
Preston Robert Tisch, co-owner of the New York Giants, also made the trek to Durham, N.C., lured by the reputation of another neuro-oncologist known to go beyond conventional treatments with off-label use of approved chemotherapy agents.
What might be more surprising is that a retail store clerk in San Jose, Calif., a part-time lawyer in Los Angeles, the young son of a pastor and a stay-at-home mom, and thousands of other people without wealth or fame also can jump in a car, hop on a train or grab a flight to travel far from home after their own networking and Internet searches have convinced them that the best care was elsewhere.
As people come to Los Angeles from Arizona, Australia and Albania in search of unique medical expertise, they might well hustle past Angelenos at the airport on their way to Boston, Denver or Rochester, Minn., on their own health-care odysseys.
A study of more than 260,000 patients in 218 California hospitals, presented at the 2002 meeting of the Academy for Health Services Research and Health Policy, found that hospitals performing a lot of coronary bypass artery grafts each year, an average of 397, had a mortality rate of 2.7 percent. Hospitals with a lighter volume of the procedures, an average of 119 a year, had a mortality rate of 3.4 percent.
Those procedures and four other heart surgeries could result in almost 2,600 deaths annually if they were all done at low-volume, rather than high-volume, institutions, according to a September 2001 study in the journal Surgery.
The more complex the surgery, the greater the benefit of finding a hospital that does a high volume.
A study in the April 11, 2002, New England Journal of Medicine examined Medicare surgeries in 14 categories including six types of heart operations and eight cancer surgeries, a total of 2.5 million procedures, performed between 1994 and 1999.
The complicated and rare Whipple procedure for pancreatic cancer, for example, has a fivefold higher death rate in hospitals that rarely perform the surgery than in those whose surgeons do it a lot.
"If I were having my appendix out, or a hernia repaired, I'd go to a community hospital," Roper says. "But if what I had was a life-threatening heart or cancer problem, I would search high and low for the best place. It seems that's what Senator Kennedy did. I think he was well-advised."
Only a handful of hospitals have neurosurgeons like Kennedy's physician at Duke, Dr. Allan Friedman, who have extensive experience in what's called sleep-awake brain surgery, which Kennedy required.
"I think the reason it's done in such a limited number of centers is that there's a huge learning curve," says Dr. Linda Liau, director of the brain tumor center at the Jonsson Comprehensive Cancer at the University of California, Los Angeles.
She does about 250 such surgeries each year and says that a surgeon needs about 100 cases a year to become and remain truly competent. Few have that kind of experience.
"If you only do one or two a year, you're not going to be able to gain that expertise," Liau says.
It's a risky business, poking around a person's brain, more so if, as in Kennedy's case, the tumor is near the parietal area of the left hemisphere, which controls language.