You Are Your Own
Best Advocate!
By Michelle Mayer, R.N., M.P.H., Ph.D. (originally published
in "Scleroderma Voice," 2002 #3)
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One would think that I would be well-qualified to navigate
the healthcare system. I began my professional career as a
nurse and later became a Ph.D.-trained health services researcher.
I am also married to a physician.
However, despite all of my and my husband's training and
experience, it has been incredibly hard to find my way through
the maze. From scheduling appointments to paying for services,
the process of obtaining high-quality medical care is fraught
with difficulties.
In my opinion, this process is even more difficult for persons
afflicted with relatively rare and incurable diseases like
scleroderma.
A Struggle from the Start
Without a doubt, my story is like those of many other scleroderma
patients. Despite having diagnosed myself with scleroderma
one month after the onset of my symptoms, it took 14 months
and three doctors to confirm the diagnosis.
Several scleroderma "experts" cautioned me against
attempting a pregnancy, although the small existing medical
literature had already demonstrated that the majority of scleroderma
pregnancies have a good outcome.
And, of course, I have endured all the usual inconveniences
and frustrations: long waits to get appointments, followed
by long waits in the patient waiting area; cold patient rooms;
poor pain control, especially after postoperative procedures;
and providers who didn't look me in the eye or shake my hand,
let alone listen to my questions or understand my needs.
Not all my experiences with the healthcare system have been
negative, but many of them have.
Chronic Diseases Fall Through the
Cracks
Much of the system is oriented toward treating a disease
rather than a patient. For those among us with incurable diseases
that affect many aspects of our lives, this "curative"
focus is not helpful in our patient care.
I think that many physicians, faced with an incurable illness
like scleroderma, recoil in defeat. They fail to realize how
helpful they can be in preventing or minimizing complications
and disability, preserving function, and eliminating pain.
First, Properly Orient Your Thinking
I have often wondered how people without the benefit of clinical
or research training navigate this difficult system. So I
have developed some tips to help you get the most out of your
care.
Begin by understanding that scleroderma has the potential
to affect your life negatively in two ways:
1) cutting it short; and
2) making it less enjoyable.
Therefore, until a cure for scleroderma is discovered, your
medical care should focus on lengthening your life and making
your life more enjoyable. Pain control and physical therapy-that
is, dealing with the disease's impact-deserve as much of your
attention and investment as treating the disease itself.
Practical Tips from My Experience
Now that you understand what your focus needs to be, decide
what is important to you. What makes your life worthwhile?
What can you not live without? Your medical care should be
organized in such a way as to pre serve your ability to live
a fulfilling life according to your own standards.
For example, I wanted to have children in spite of my scleroderma.
I found that many physicians failed to appreciate the importance
of this issue in my life and, consequently, dismissed my needs
inappropriately.
1. Learn all you can about scleroderma.
Inform yourself about the disease, existing effective treatments,
ongoing research trials, symptom management, etc. The Internet
can be a wonderful resource as can other patients with scleroderma.
You can also access the medical literature through the National
Library of Medicine's web site at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi.
2. Learn all you can about your health insurance.
Whenever possible, choose your health insurance carefully.
Obtain the most comprehensive coverage that you can afford.
There are many issues to consider, such as: What physicians
are available to you in network and out-of-network?
Can you choose your own provider?
Does your insurance cover ancillary services, such as physical
therapy?
What will be your deductible, co-insurance rate, and out-of-pocket
maximum?
Find qualified, knowledgeable physicians who perceive themselves
as your "partners" in improving your health. Your
physicians need to view you holistically—that is, as
a whole person, not just as a scleroderma patient. They need
to appreciate how scleroderma affects your life and demonstrate
a willingness to help you minimize its negative consequences.
Your physicians should treat you with dignity and be willing
to answer your questions in a nonjudgmental manner. If you're
not comfortable with your physicians, find new ones.
3. Ask for what you need.
Redefine your concept of being a "good" patient.
You are your own best advocate. Remember, your doctor works
for you.
Do not be afraid to assert yourself and ask for what you
need. This applies to even the simplest procedures. For example,
blood draws are painful for patients with scleroderma. Ask
your physician to describe EMLA or Elamax, anesthetic creams
that can be applied to the site one-half hour before blood
draws to numb the area. You won't even feel the blood draw.
Also, ask the phlebotomist to use a butterfly needle, which
is smaller than the needles they typically use.
4. Manage your pain effectively.
Do not live in pain. There are a variety of pain medications
available to treat everything from joint pain to nerve pain.
You should not have to suffer. If your primary care provider
or rheumatologist is not able to or is uncomfortable with
managing your pain, ask for a referral to a pain specialist.
5. Screen for scleroderma-related complications.
Work with your provider to develop a schedule of screening
tests to ensure that scleroderma-related complications, such
as renal involvement, pulmonary fibrosis, and hypertension,
are found as early as possible. Do not wait for symptoms.
6. Use therapies to minimize scleroderma's
impact.
Use ancillary services, such as physical and occupational
therapy and biofeedback, to minimize the effects of the disease
and prevent disability. Do not wait for your doctor to suggest
these services. Ask for them at the time of diagnosis or soon
thereafter.
7. Read your medical bills carefully.
Read your medical bills, because they are often filled with
errors. Do not pay bills until you've reviewed them carefully
and compared them to the Explanation of Benefit statements
you received from your insurer.
Empower Yourself to Lead the Life You
Want!
I decided early on in my disease that scleroderma might shorten
my life, but it did not have to ruin it. I have managed my
healthcare in such a way as to preserve as much normalcy as
possible. At times it has been difficult to find like-minded
providers who would allow me to manage my care, but I have
been able to assemble a cadre of doctors comfortable with
this arrangement.
Despite having diffuse scleroderma with pulmonary fibrosis,
I live a very fulfilling life that resembles the one I would
have wanted had I never developed scleroderma: I have two
healthy toddlers, work part-time, exercise daily, travel,
garden, and sew.
Had I not been
assertive in dealing with the healthcare system, I feel certain
that my life would be very different.
Taking control
of one's health care can be an exhausting process. If you
are too sick to fight for yourself, find a family member or
friend willing to do it for you. Know your needs and goals,
find a provider willing to accommodate them, and be persistent. |
