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Managed Care
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This article was
originally written for a publication for mental health professionals and
patients. If you have personal experience with managed care that
you would like to share or you would just like to comment, please send
me a note.
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Managed Care: What You Don't Know Can
Hurt You!
by
B.G. Erengil
I first became sensitized to the plight of the patient under managed
care by reading the sporadic horror stories in the press. These front-page
stories generally involve a white woman whose HMO doctor fails to biopsy
her breast-lump until cancer has metastasized all over her body. Or,
a black male with all the heart-disease risk-factors who is denied an
angiogram.
Yes, Virginia! There is a pecking order to diseases! Some diseases are
more politically "in" than others. We all know the more political
backing there is, the more attention, the more funds, and the more patient-protection
legislation. My guess is that if AIDS rates a 10, then breast cancer
is a 7, prostate cancer is a 6, ... Yes, you guessed it. I am unable
to assign a number to the mental health category. If I have to judge
by the coverage in the popular press, this category is close to the bottom
of the food-chain.
But no matter where we may rank in the food-chain, information is our
key to climbing out of our predicament. Lobbyists are great. They may
even be able to move some funds out of the prostate cancer category to
the breast cancer category. But, that is a zero-sum game! I don't want
to play a zero-sum game. Besides, I have a husband -- I don't want less
funds for prostate cancer!
Information will enable us to change the game itself -- to change the
managed care system fundamentally, from the inside out. And, that brings
me to the Internet -- a world-wide network of computers containing enormous
amounts of information -- accessible from the comfort of your living
room. Among this libraries' worth of information is medical information:
information on every disease under the sun; summaries of millions of
articles on diseases, treatment options, diagnostic tests, drugs; lists
of ongoing trials, experts, institutions.
Some patients (or their families and friends) are already accessing this
information; and it is changing the treatment they get from their managed
care providers.
HMO's and other managed care organizations have an incentive in withholding,
not just treatments and diagnostic tests, but more importantly, information
from patients. An informed patient is a pesky patient. Put yourself in
the shoes of a managed care gate-keeper. You are telling the mother of
a disturbed little boy, "Here, give him these pills twice a day.
They will make him behave better in class." How would you
like it if the lady piped up, "But, Doctor, I read in the American
Journal Of Psychiatry that these pills work better if he also has some
therapy sessions!" Really! And, you have already made enough therapy
referrals for the month! The cheek of some mothers!
One does not have to be a rocket-scientist to figure out that patients
need to develop their own independent sources of information. Gone are
the days when the patient's and doctor's interests were aligned. In the
old days, the doctor kept you alive and the doctor kept getting paid.
Now, an HMO is clearly better off if patients with chronic, expensive
diseases die as soon as practicable. This is a cold, hard fact. You can
sugar-coat it in a variety of ways, but you cannot explain it away --
not in any logical manner, anyway. Recognize it. Learn to live with it.
Don't get me wrong. HMO's are great -- for routine, clear-cut conditions.
I tend to get wax build-up in my ears and I always get my ears cleaned
at the HMO we belong to. I also have my annual mammogram and pap-smear
and flu-shot there. They are especially good with pap-smears. They have
a policy to do them, and they will catch you in the corridor, if they
must, to give you your pap-smear. HMO's provide for the greatest good
of the greatest number.
But, if you are unfortunate enough to have a condition which is hard
to diagnose, or, for which there is no clear-cut standard of care, or,
which is ambiguous in any way, you should expect them to cut corners.
And, conduct yourself accordingly.
I have been researching medical information accessible via the Internet
for some time now, and I realize that I personally would never take the
word of a managed care provider on any serious disease.
If you have the money, you can consult several outside specialists on
your disease. But, next to money, knowledge is the patient's best friend.
Go to your local library and study an overview of your disease in a reputable
basic text, such as the Merck Manual Of Diagnosis And Therapy. If you
have on-line access to the Internet, use it to find out more about your
condition. If you don't have access, try to get it. The more serious
or ambiguous the disease, the more important this becomes. Using the
Internet, you can research the most important medical databases (such
as Medline from the National Library of Medicine) containing treasure-troves
of the latest treatment options. Remember how stingy an HMO can be with
the latest treatment breakthroughs, and arm yourself with the most reputable
and authoritative published material. Visit the special-interest web-sites
and learn from fellow sufferers of the same condition.
Knowledge is your lever with your HMO. An informed patient, who is also
studiously documenting what is being said, changes the doctor-patient
dynamic. It changes the doctor's cost-benefit equation. There is now
a new cost to worry about! "Would this patient sue?" the doctor
asks himself. "Perhaps, not diligently investigating is not the
most cost-effective course in this case!" he/she reasons, authorizing
the treatments you need, without you having to go to other specialists
or to court!
I group the information available via the Internet into two broad categories:
information that you have to pay for and information that is free.
As you can imagine, the paid category is organized, is easier to understand,
and makes it much faster to get to what you are looking for. This category
also includes the most important and useful databases maintained by the
government, such as Medline. I know you are surprised -- the government
is charging for the information! Except, of course, portions of Medline
that pertain to diseases that have more political backing -- they don't
charge for those!!! I shall let you contemplate this for a while.
The free category consists of computer sites all over the United States
and the world, containing all sorts of wonderful and useful information
for the patient. These include:
- Sites containing the free databases maintained by the government,
- Sites maintained by academic organizations,
- Disease-specific sites maintained by patient organizations, patients
themselves, some volunteer doctors, etc.,
- Sites that are trying to organize all this information.
A good beginning point for your exploration is one of the free sites
that try to organize the information (such as Yahoo, a popular and well-known
site that serves as a "table of contents" for the Internet).
If the condition is urgent or of the rapidly-progressing type, move onto
a paid service. Charges for the paid sites are usually in the range $5
- $30 per month. Sometimes, there are additional pay-for-what-you-use
type of charges.
Whenever I get on my high-horse and start regaling my husband with my
ideas on how to reform managed care using information as leverage, he
coldly points out that the informed consumer also gets a much better
deal from the used-car dealer or the plumber. "How about the patient
who does not have the education or the time or the money to understand
the information or to use it effectively?" he asks.
I guess it is a pretty sad world if we have to be on our guard with our
doctors, the way we are with used-car dealers. But, I think widely disseminated
and accessible information is already starting to slowly change managed
care itself -- for the better -- by influencing the way it makes decisions.
After all, a managed care organization is a bit like a little totalitarian
state, with its gate-keepers and functionaries making allocation decisions
behind your back; and, we know what is happening to totalitarian states
in the information age. When the glaring light of information is turned
on, the cockroaches scatter.
Patient advocacy groups are doing a great job, lobbying for patient issues
and providing information to patients. But they can increase their effectiveness
by paying more attention to the broader issues of making information
available for all patients -- sort of helping nudge forward the tide
of information that will change managed care itself!
I read that Mrs. Tipper Gore is a great advocate for mental health care.
Well, let's try to get her to use her good offices to provide free Medline
access for mental health care, in the same way that it is provided free
to AIDS patients! In fact, how about providing it for free for all
disease categories?
Patients and patient advocacy groups interested in changing the system
should start by bringing pressure to ensure that all diseases are treated
on an equal footing -- and it starts with access to information!
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