Becoming Your Own Patient Advocate
Lost In The System: Becoming Your Own Patient Advocate
by Faith Addiss, BSN, RN
Anna, a 50-year-old diabetic suffering from asthma, went to the
doctor. As is fairly routine, the MD prescribed an inhalant called
Azmacort which Anna refused. Was she being difficult and
uncooperative? No, she was acting as her own patient advocate. Anna
knows she is an unstable diabetic, meaning her blood sugar level is
harder to control than most diabetics. Azmacort is a glucosteroid,
and steroids can elevate glucose levels. Such a rise in Anna's case
could pose a serious risk to her life.
You might wonder how something like this could happen. The
doctor made a mistake. The more pressing question is, "How can I
keep something like this from happening to me or my loved ones?"
Traditionally the role of patient advocate has belonged to health
care professionals, particularly nurses. Gone are GPs who treat the
whole family for years. Going swiftly are whole-patient centered
RNs, replaced by task-specific assistants and technicians.
In today's world of fragmented health care, it is important to
become a self-advocate. Even if you don't smoke, lie around and eat
fat, eventually you will have to navigate the health care system.
Or, as Billy Crystal phrased it in the movie City Slickers, "have a
When we are ill, we feel vulnerable, and we want to put all our
trust in an expert who will take care of everything. Many
practitioners today don't have the time or inclination to take on
that responsibility. Besides, if they assume the role of
all-knowing parent, guess where that leaves you? With such serious
matters as quality of life at stake, to assume the passive,
powerless role of child could have disastrous consequences.
How to become your own health advocate...
KEEP PERSONAL RECORDS such as a copy of your medical chart if
you move or change doctors. When hospitalized, keep a daily log of
who did what, when, where, how and why.
KNOW YOUR MEDICATION(S) and learn both the brand and generic
names. Consult your doctor, pharmacist and a reference book, such
as the Physicians Desk Reference (PDR), for the drug's actions,
side effects, adverse reactions, contraindications, proper dosing
and what to avoid - such as alcohol, other drugs, certain foods or
KEEP A PAPER TRAIL of billing slips, insurance forms, encounter
slips (those papers you leave the doctor's office with), pharmacy
receipts and the insurance company's EOBs (explanation of
benefits). They might not seem important at the time, but they
contain the codes which designate diagnosis (ICD-9) and the
procedures performed (CPT-4). The procedure code must correspond to
the diagnosis code. For example, if your diagnosis is tuberculosis,
an allowable procedure would be a chest x-ray but not an
GET EDUCATED if you have a serious or chronic disease or
disorder. Research the condition thoroughly because the more you
know, the easier it will be for you and your doctor to work as a
team. Check the libraries of local medical schools and hospitals
for recent materials such as periodicals. Ask the librarians for
help. If you use a computer with a modem, you are half way there.
Go to a search engine such as www.yahoo.com or www.excite.com and
type in the name of the disease and see what comes up. Explore from
there but use caution because you never know...
WHO GOES THERE. Review any site critically. Who runs it and who
pays for it? If a site is run by a drug company, their drugs will
probably be recommended for use This is not to say that
pharmaceutical sites should be disregarded; just stay
USE INFORMATION WISELY and don't stop or change medications or
treatments because of something you read, no matter how compelling.
ASK YOUR DOCTOR FIRST! For those who are saying, "I'm not a doctor.
I'll just do what he/she says," remember:
THE DOCTOR COULD BE WRONG or THE DOCTOR COULD BE RIGHT BUT NOT
IN YOUR CASE (like Anna).
A DOCTOR CANNOT KEEP CURRENT ON EVERYTHING and might not know
the latest about your illness. (A few years ago I had the region's
top neurosurgeon's recommendation improved upon by a
slightly-younger neurosurgeon who suggested a different surgical
approach which saved me from additional surgery and cut my recovery
YOU MIGHT NOT NEED THAT SURGERY (PROCEDURE). We've all read or
heard stories about women who had unnecessary hysterectomies.
YOU MIGHT NEED THE SURGERY the doctor hasn't mentioned or
recommended because of restrictions by the insurance company.
Remember this question: Who is actually paying the doctor?
ASSERT YOURSELF and be the best health advocate possible. Become
an educated patient, make informed decisions and play an active
role in protecting your health.
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