How to find the best medical treatment
How to find the best medical treatment
June 23, 2008
Be open to the hospital your insurance plan recommends.
"This whole notion of centers of excellence used to be based on gestalt and individual recommendations," says Dr. William Roper, dean of the medical school and chief executive of the healthcare system at the University of North Carolina.
"It's becoming much more data-driven and evidence-based."
To determine the "best," arm yourself with numbers.
If the doctor, or hospital, you want has more experience than the one your insurer has chosen, show your insurer the numbers. A surgeon who has done a procedure a few hundred times will have better results than one who has done it two or three times. "There's a growing body of evidence that says that volume matters," Roper says.
The only way to find out is to ask, so don't be shy about asking physicians how many times they've done the procedure, or treated the condition.
And be specific. A cardiac surgeon who has done hundreds of heart bypasses is not necessarily an expert in valve replacements.
Get recommendations.
The less common the disorder, the fewer the institutions that will have deep experience with it. But it's just those institutions you want to find. Each time you talk to a provider, don't end the conversation without asking who else has experience with your condition or which institutions are known for treating the disease. Keep following the chain of recommendations to see if one or two names are consistently repeated.
Do your homework.
Track down statistics and studies as tailor-made to your condition as possible.
Search for articles at the National Institutes of Health's free
archive of medical journals (pubmedcentral.nih.gov).
Find out
who is doing research into your condition. If a physician publishes a
lot about your condition, there's a good chance he or she is already onto
potentially better techniques, even if results haven't yet been published. "What
is published is always years behind what is happening at major academic
centers," says Dr. Henry Friedman, deputy director of the Preston Robert Tisch
Brain Tumor Center at Duke University Medical Center in North
Carolina. Even if you don't want, or qualify for, a clinical trial, find
out which institutions are researching your condition.
Make
appointments. When you find a doctor or hospital doing research into
your disease, call the physician or the institution. Large academic centers all
have physician referral departments set up to connect patients with the
appropriate physician. Your insurance company will cover a second opinion, and
going to a large center for that second opinion can be the entryway to
excellence. Whatever your disease, go
online.
Check out the
disease advocacy group's chat rooms. Patients who have gone through what you're
facing have a lot of first-hand advice about what they've done, where they've
gone and how it turned out. In the absence of good national quality and outcomes
measures of doctors and hospitals, the personal experience of your peers is
invaluable.
Try to change Medicare
plans if necessary. The original Medicare plan has more geographic
flexibility than the private plan alternatives. (First of all, consider
carefully when choosing a plan.) If you need help changing plans after a
diagnosis, try calling the Medicare
Rights Center (medicarerights.org
or [800] 333-4114), a national consumer organization that provides counseling
about Medicare. "Sometimes our advocates have been able to help people get off
the private plan and back on original Medicare," says Paul Precht, director for
policy and communications at the center. "But it's getting harder."
Be realistic. Don't think you can find a cutting-edge
technique developed by one surgeon, then ask your own doctor to do it. "That's
like going to a restaurant with a recipe from another restaurant and asking the
kitchen to make it," Adler says. You could ask the doctor who developed the
procedure if he or she has trained any others. If so, find out where they are
practicing, and how experienced they have become. That process of training
others, and having them fan out, is how once-unique techniques spread across the
country, but it takes a lot of time. Be prepared to
fight. Use the ammunition you've accumulated through research. Fights
with insurance companies can be frustrating and drawn out, so if you're also
fighting disease, you might need to enlist a spouse or friends to make phone
calls and write letters, to the insurer, to legal aid societies or to a private
lawyer. If you're wrangling with Medicare, the Medicare Rights Center
might be able to help fight a denial. Get your doctor's
support. Whether you're facing Medicare or an insurance company, your
chosen doctor is your best ally. He or she is the one best armed with numbers to
make your case to the insurer. For example, surgeons at Johns Hopkins
Medical Center published a study in 1995 of a surgical technique, called a
Whipple procedure, that can help some pancreatic cancer patients. The study
examined all 501 cases of pancreatic cancer in which the procedure was used
between 1988 to 1993 throughout Maryland. It found that 54% of Whipple procedures were
performed at Johns Hopkins Medical Center. The remainder were performed at 38
other hospitals throughout the state. The in-hospital death rate at Hopkins was
2.2%, compared with an average of 13.5% at the other hospitals. But what
probably got the attention of insurance companies was that the cost at Johns
Hopkins was $26,204, compared with an average of $31,659 at other
hospitals. Even if there isn't such incontrovertible, published proof
supporting your decision, your chosen physician will likely have other
numbers. If you lose the fight and continue to be convinced that where
you go matters to you, be prepared to shell out. Whether it's a
higher co-payment for going out of network, or taking on the entire cost
yourself if you can afford it, your preference may be important enough to you to
pull out your checkbook or credit card. Finally, try not to second-guess your own decision.
