How Active Should We Be in Our Own Medical Care?

Be a thinking, active, participating person in your family's health care. Do your homework. Trust your gut instinct. Ask questions, even if you feel uncomfortable doing so.
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How much responsibility should we take for our own medical care? Of course, we need to make the required doctors' appointments and follow up on test results. But, if we have anything out of the ordinary wrong with us, how much faith do we put into the course of treatment physicians set us on? Do we blindly follow their advice because... well, because they're doctors? I don't think so.

Most of us are intimidated by the highly complex medical jargon uttered by physicians when it comes to something as simple as the common cold. Just give us our antibiotic and let us get on with our busy lives. We don't want to take the time out to truly understand the details. After all, that's what we're paying them for. Right?

I acknowledge that I may be more inquisitive than most when it comes to things like this, some might even say skeptical. With a simple cold or strep throat, I agree, don't waste a lot of your precious time questioning what the doctor requests you to do. No one wants to be that annoying person that hinders the doctor from doing their job. But, where is the line? When is it not ok to blindly take a pill and follow "doctor's orders"?

God forbid we are unfortunate enough to have something really wrong with us -- or worse yet, our children. Once we have done the research to determine the best physician, at that point, do we accept everything they say?

For innumerable reasons, doctors are overbooked and overworked these days. We all know the drill -- we wait for an hour to get back into the examination room. Then, often, we wait another hour to actually get to see the doctor. Once the doctor finally enters the room, they normally have a rushed demeanor and in a proverbial sense, they already have one foot out the door, ready to race onto the next person who has also been waiting for two hours. They ask a few questions, do a quickie exam, and if you haven't written down all your questions, you are sure to have forgotten to ask half of them, due to the tension you inevitably feel from the doctor already having one hand on the doorknob. I don't mean to bash doctors. My best friend in the entire world is a doctor. It's the managed care system that causes this terrible cycle. But, I digress.

Whatever the reason, how much responsibility should we take on to ensure we are getting the care we need and nothing falls through the cracks?

I'll use a rather extreme example, but I'm sure many can apply it to similar, and hopefully less extreme, scenarios in their own lives. My 5-year-old daughter has leukemia. During the first couple of months after her diagnosis, we spent a lot of time in the hospital. There were doctors, residents, medical students, nurses, social workers, the list goes on... in and out of our room 24 hours a day. I'd have a concern and the resident would write it down. An hour later, a medical student would come and ask the same question. Another hour later a doctor would come in and ask me again. Two hours later, yet a different doctor would come in, but now another concern was taking center stage. I was the only constant, the only person who witnessed everything that went on and saw the totality of the circumstances. Not necessarily because the medical staff was doing anything "wrong," but because logistically, there cannot be one person to monitor you around the clock. No one, except you.

I knew nothing about leukemia before Dec. 5, 2011, but as soon as my daughter was diagnosed, I did my homework and made every effort to learn as much as I could. With leukemia, your bone marrow isn't making blood cells properly, so blood transfusions become a common occurrence.

The doctors had been checking her blood counts daily. At a certain point, when they appeared stable, they decided not to check them for the next five days. During this time, I noticed her getting paler by the day, a glazed look in her eyes that wasn't normal for her and that you might not notice if you weren't her mother, and her speech started to slur. From my short experience with the disease, I suspected that her hemoglobin (red blood count) may be low. I kept mentioning it to the nurses and doctors and suggested they get a CBC (complete blood count), but they basically dismissed my concerns and told me, based on their protocol, they would test in a few days. By the next afternoon, I could tell she was getting progressively worse and finally demanded a blood test, and guess what? Her hemoglobin was so low that she was in danger of having a heart attack or stroke at any point, and needed an immediate blood transfusion.

I was beyond furious that following "the protocol" would allow us to get to this point, but that is a topic for a different day. My point is this -- doctors are busy, not to mention human. They are not these super-beings that know everything and always make the right choices for us. We have a responsibility to ourselves to confirm what they say. We are the only ones that truly know all of our symptoms and the stability, or instability, of how we're feeling. If you ever have a gut feeling that something just isn't right, regardless of what the doctor has told you, ask until you get a definitive answer. Don't be intimidated because it's "a doctor." If there is ever a time to speak up, this is it.

I am a lawyer and a mother. Not a doctor by any stretch of the imagination. But, I am a thinking person and I shudder to consider what could have happened had I not finally demanded action that was contrary to the physicians' "standard protocol."

Be a thinking, active, participating person in your family's health care. Do your homework. Trust your gut instinct. Ask questions, even if you feel uncomfortable doing so.

It can make a big difference.

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