Patient power: Lessons from a lifetime of health care

by Lorene Burkhart

Since my uncle delivered me into the world 75 years ago, I’ve seen more than 50 doctors. Many served me well, but not everyone measured up to Uncle Doc.

One physician misdiagnosed me with multiple sclerosis. Another advised me to have multiple jaw surgeries, which I did, only to find out later they were unnecessary. Turns out he was addicted to drugs and needed cash.

Other doctors have disrespected and ignored me; I've endured the loss of medical records; and I've lost considerable faith in the medical system.

Along the way I realized my medical care — my health — is my responsibility. I had to get over the child-like approach I was taking to my medical-professional relationships. I decided since I can't control the system, I had to take control myself. I had to become a better patient.

During an appointment with a dermatologist in May 2008, I mentioned an unusual itch on my vulva. Within days, I was diagnosed with a rare condition called extramammary Paget's disease typically found in postmenopausal white women. I had surgery to remove a small growth in the vaginal area which was later found to contain cancer cells. The surgeon recommended a second procedure to remove more tissue on the chance that cancer cells might have spread further.

That's when I decided to get a second opinion. I went to a doctor specializing in gynecology and oncology who recommended against surgery. A third doctor told me that patients with Paget's who get regular follow-up care and take care of themselves do well without surgery.

I ultimately opted not to have another operation. And, in the two years since, I've had no recurrence of cancer. I've also come to realize that while there are certainly factors outside one's control — such as my cancer diagnosis — our health, and the care we get, largely depends on the choices we make.

By taking control of my health care and becoming an empowered patient, I've found I get much more in return. And I think others who take the reins will too.

Lorene Burkhart is an educator, philanthropist and author of "Sick of Doctors? Then Do Something About It! A Prescription for Patient Empowerment." She resides in Indianapolis, where she is a community leader, having served on nearly 30 boards.


Power to the patient

Burkhart recommends doing your homework and following these rules to improve your health care experience:

Shop for a doctor — Ask friends and co-workers about their doctors and check reviews on Angie's List. When you find a physician you think is suitable, schedule a "meet and greet" (it should be free) to ask more questions about that person's background and practice philosophy. If you like what you hear, schedule an appointment.

Be prepared — Create a personalized health care notebook including basic medical information — health history, family history, immunizations, medications, procedures, hospitalizations, lifestyle and more. Physicians can easily glance through it and make copies for their files and you can add your medical records to it as well.

Speak up — Provide ample details on any symptoms you're having and your medical history. Refrain from self-diagnosis. Physicians are scientists. Let them make the diagnosis. Look what happened when I simply told my doctor, "I have an itch!"

Know your options — Don't be shy about asking questions and discussing treatment options. You don't have to agree with the doctor, but you should make informed decisions. And don't be afraid to get a second, or even third, opinion.

Own your body — Eat right, exercise and keep your weight down. After discussing your options and reaching an agreement, follow your doctor's orders.


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Building a relationship with a primary care physician can help to improve your health care, as the doctor will become familiar with any pre-existing conditions, medications and needs. (Photo by Karen Geswein)
Building a relationship with a primary care physician can help to improve your health care, as the doctor will become familiar with any pre-existing conditions, medications and needs. (Photo by Karen Geswein)

You may balk at seeing a primary care physician regularly—except for that time you broke your wrist, had surgery to remove your appendix and caught the flu—but doing so can prove vital to your health.

Comments

This is an excellent article. The five rules are golden!

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