Tuesday, July 1, 2008

Effective communication with our doctors

I am getting ready for my check up appointment with my HCM Cardiologist and I am feeling little apprehensive about the visit. Ever since the diagnosis, visits to the doctors seem suddenly anything but routine. It is sort of like walking on a thin line, I want to know what is going on, but I don’t want to hear anything bad. The truth of the matter is I really only want good news. And there will be some, I have lost a good amount of weight and effectively reduced my BMI, I have been more active and so I feel a bit stronger and less winded. I know that puts less strain on my heart so that is good. However, there is also the dramatic increase in pacing from my device that has been going on since I have been on medication and that worries me. Also an increase in the pain around my heart and a disturbing inability to sleep laying flat are definitely on the chat list.

I don’t know what these latest symptoms are from, it could be a side effect of the medication or it could be from the underlying heart condition itself. Either way, these questions are worrisome and I need to discuss it with my doctor. And that is where my stress comes in. How do I talk to my doctor, give him the information he needs and get answers and not seem like some freaked out hypochondriac? In other words, how do I become an active participant in my medical care?

With that in mind, a book recently caught my eye… How Doctors Think” by Jerome Groopman, M.D. The book gave me a bit of insight into the pressure on a doctor. Without coming off as a preachy or defensive, but the book offers a perspective from their point of view.

The way doctors think is something that is drilled into them from the beginning of their training. In a nut shell they are taught to look at the symptoms, think of the known causes for them and test to see if you which one is the cause. The problem is that many illnesses and diseases have similar symptoms. To deal with this, the law of averages comes in, and doctors are taught to think of the most common cause. Often, this means that doctors toss out the symptoms that don’t fit, or stop considering any other causes in a sort of tunnel vision way. When the cause it not the most common problem AND the patient just doesn’t let the doctor know the symptoms are still present, misdiagnoses occur.

I remember going to my primary care physician several times for other reasons and in passing mentioned the ‘racing heart and light headiness’ I would sometimes feel. I had felt them forever but they did seem to be increasing in frequency and becoming stronger. The typical office visit would go like this; after we had discussed whatever else I went to see her for I would mention the sudden fast heart rate, she would bring up hormone fluctuations or maybe sensitivity to caffeine, she would ask me if I wanted to do an EKG and I would say no it isn’t important, and we would not pursue it. Each time I brought it up, I would feel silly and worry that she would think I was looking for something to be wrong. And really, I wanted to believe it was nothing harmful so I just stopped mentioning it. There had been two deaths from ‘heart attacks’ in my family (Grandfather and Uncle) but my cholesterol, blood pressure and heart rate were all good so I was not at risk for heart attacks so why pursue it? About a year later, while I was being prepped for small procedure that had nothing to do with my heart but required general anesthesia they decided to run an EKG because I was over 40 years of age. That test found a problem, that lead to a referral for an echocardiogram that showed the typical thickening of the septum between my ventricles that led to the diagnosis of obstructive hypertrophic cardiomyopathy (HCM). HCM as it is now known is the leading cause of sudden cardiac death world wide.

Now two years later, I have learned a great deal about the disease, about treatment options, about my family history and about my own symptoms that had been present since I was a child but never properly diagnosed. However, I am still learning how to be an active participant in my health care.

This is made difficult by the changes roles currently taking place in healthcare. Doctors are no longer the pinnacle of knowledge they once had been (Doctor/Gods). They are under scrutiny from insurance companies, governmental regulations and laws, patients and even their peers as they never have been before. The information on the internet and in TV commercials is mostly helpful but at times misleading and inflammatory. And don’t forget that personal injury lawyers are waiting in the shadows to jump on the smallest little thing. To make ends meet doctors often have to increase their patient loads.

That leads to shortened visit times and rush to get to the next patient. I have to be honest here, my doctor takes as much time with me as I need and I am grateful for that but since he does that with all his patients, that means he is often running late. That makes me feel like I need to hurry to help him catch up and so I tend to hurry through my issues and most often forget to mention something. This is a disservice to my doctor as it may be that the things I don’t mention are important and he should have known before he decided on any changes in my treatment.

What can we do with the time we have with our doctors? Here are a few suggestions.

  1. Make sure you have the right fit for a doctor. Doctors are people too and each has their own personality. That doesn’t change just because they put on a white coat. As with all people, some get along well and some don’t. If you don’t feel comfortable for any reason, find a new doctor.
    My PCP always touches me on the arm during our hellos and initial conversation. That makes me feel like she cares and is there for me, but anyone who knows me, knows I value touch (I am touch happy to the core). But that may not be the same for the next patient. If you are uncomfortable with your doctor, how can you have open and relaxed dialog? And, speaking of dialog, your doctor should never talk down to you, if you don’t understand what they are saying, tell them to write it down. That applies to terms, medication names and treatment plans (how do you think I learned how to spell hypertrophic cardiomyopathy, my doctor wrote it down for me)
  2. Make a list of questions ahead of time. Don’t skip over any of these questions even if the doctor is in a hurry.
  3. Add these questions to your list:

    A. What are the other possible causes for these symptoms? The book specifically brings this question up to help your doctor break out of the tunnel vision that may result from earlier conversation. If nothing else, this question will remind him/her to keep the other possible causes in mind and your doctor should be willing to talk to you about them.

    B. What are the expected results of this treatment/medication. With medication, don’t forget to ask about side effects and possible interactions with other meds!!

    C. If this test/medication/treatment doesn’t bring about the expected results, what is the next step?

This isn’t anything earth shattering, but these small steps will help to focus your questions for your doctor, ensure you tell your doctor everything and make the best of both your time.

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