Patients go on a quest for the best medical care
EVERY DAY, doctors and hospitals bring healthy babies into the world, 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. Excellence is expected.
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 healthcare 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 healthcare system at the University of North Carolina.
People with financial resources, national standing and a network of well-connected advisors can easily get themselves to the best doctor or hospital in the country. Democratic Sen. Edward M. Kennedy, who was diagnosed with malignant glioma, a cancerous brain tumor, left his home state of Massachusetts to have surgery at Duke University Medical Center performed by an internationally renowned neurosurgeon known for his skilled experience.
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 may be more surprising is that a retail store clerk in San Jose, 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 may well hustle past Angelenos at LAX on their way to Boston, Denver or Rochester, Minn., on their own healthcare odysseys.
Where a patient, whether rich or not so rich, goes for medical care can make all the difference.
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%. Hospitals with a lighter volume of the procedures, an average of 119 a year, had a mortality rate of 3.4%.
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.
A complicated and rare procedure like the 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 Sen. Kennedy did. I think he was well-advised.”
Only a handful of hospitals in the country, including Duke, UC San Francisco and UCLA Medical Center, 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 UCLA’s Jonsson Comprehensive Cancer.
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.
If the patient is asleep the whole time, the surgeon may inadvertently snip tissue or connections that allow word recall or speech. But in awake cranial surgery, the patient is asleep only long enough for the surgeon to make the initial incision and open the skull.
Then the patient is slowly brought back to a delicate level of consciousness, straddling a fine line between feeling no pain while still being able to respond to questions. “And that takes a level of expertise among anesthesiologists,” Liau says.
“As a surgeon, I wouldn’t do this unless the anesthesiologist was comfortable and experienced.”
Even the best physician in the world needs a team of health providers to produce exceptional results. Those healthcare teams are so adept at working together that they become like married couples. But rather than finish each other’s sentences, they intuitively hand over a scalpel, or adjust the anesthesia, at precisely the right moment.
“There are so many steps in medical therapy,” says Dr. Robert Adler, vice chairman of the department of pediatrics at Childrens Hospital Los Angeles.
“When you look at good outcomes, it’s because everyone on the team is doing it right -- the nurse, the pharmacist, the therapist, the nutritionist.”
Medicine has become highly specialized, and no one can be expert in all of it. It pays to investigate and explore, regardless of how confident your initial doctor is that you need look no further.
For a lot of people, surfing the Internet, following threads of recommendations and finding people who have gone through what they were going through pays off at least in peace of mind, and maybe in longer, healthier lives.
The stories of a woman with hypertrophic cardiomyopathy and a boy with a congenital ear deformity follow.
And at latimes.com/bestmedicine, read about a patient who tracked down an unusual bloodless treatment for her Hodgkin’s disease, and a family’s pursuit of care for its patriarch, who had an inoperable brain tumor.
