Sunday, April 15, 2012

At Least One Problem With Healthcare In Our Country

As I mentioned last week, I decided to call and cancel the appointment with my endocrinologist, for the following reasons. I'm confident that my OB can detect any major problems with my health, including check my A1C and other recommended blood work. My blood sugars are under as good control as they possibly can be and I don't have any questions about how to tweak things. Finally, I was going to have to pay out-of-pocket to see someone that was, more likely than not, going to tell me that I really shouldn't have gotten pregnant in the first place and shouldn't do it again. Besides, I have been sending my blood sugars twice weekly. So, in one of the twice-weekly e-mails I sent with my blood sugar readings, I explained my reasons for cancelling the appointment on the same day.

The response I received from the PA, who reviews the blood sugars, was: "The doctor would still like to see you."

My question: Why?

The response: "Because you are pregnant and diabetic and haven't been seen since January."

My next question: I have ready access to that information. What's the problem we need to address with an office visit right now?

"Diabetes" is, as far as I can tell, a buzz word in the medical community. Doing a Google search on "diabetes" is mind-boggling. Sometimes it feels like a new epidemiological study on diabetes comes out every other week with serious public health implications. For people who have it, for people who want to avoid it, for people who are at an elevated risk for it. Pretty much everyone is affected by diabetes in some way or another, so everyone pays attention when the conversation turns to diabetes, and they set to work trying to figure out its secrets.

On the other side of the fence is a person like me. I've got the dread disease, with all its associated risks and inconveniences. I've spent long hours thinking about what it means for me to have diabetes, to live with it responsibly, to care for myself and my children at the same time, while doing the dishes, going for walks, folding the laundry, and lying awake at night with a baby using the inside of my abdomen as a trampoline. To be sure, the intensity of my contemplation has increased from the moment I first found out I was pregnant with the Pious One in September of 2008, but the reality is that I have lived with diabetes, and done so to the best of my ability, for a whopping 18 years. I have not figured out all the secrets of diabetes, but I've figured out enough of them to run my life pretty well. I don't throw myself a pity party every week, and I just do my best to manage it - with the understanding that my best is all I can do.

I am one of the lucky ones. In 18 years, I have not displayed any symptoms of kidney damage, nerve damage, or eye damage. And it's not because I've always been a perfect diabetic! I remember a few A1Cs in the 9.0s, definitely in the 8.0s, and I think I only had one A1C below 6.0 up until the time that I got pregnant the first time. In fact, my first A1C reading of my first pregnancy was 8.something. Yikes! Fortunately, I haven't had a reading over 7.0 in the 3 1/2 years since then, and scarcely one over 6.5. So I have the disease, with its risks and complications, and my blood sugar control has not ever been perfect (especially if you're going to compare it to a non-diabetic), but no other health problems to speak of.

I am grateful for the proliferation of opinions, statistics, technologies, and money being poured into the treatment of and research behind diabetes, which has, in recent years, been styled a national epidemic (not denying the veracity of the claim, only speaking tentatively because I don't know how to formally define "national epidemic"). As a result, I know way more about my disease than someone with a rare syndrome may ever know. And, technologies associated with insulin pumps are truly amazing, and truly life-changing for diabetics.

From the perspective of the healthcare community, however, I think all this attention makes every diabetic that walks into the office look, at first glance, like an uncontrollable basket case full of problems just waiting to pop up during a routine office visit. There may be an element of curiosity that doctors bring to exam room: "What do we see if we run this test? Is that result normal?" "How about this new diet?" "Hey, that pump looks cool, let's try it out." "I've heard that diabetics may suffer x, y, z problems, so let's rule those out, even though you don't have symptoms." "I had a patient one time who came in with this HORRIBLE complication, so we should look for that every 3 months, too." Furthermore, with the public health push to reduce the costs of and prevent diabetes, there is this sense that if we just twist the tourniquet a little tighter, we might be able to stop the bleeding and control the problem.

Enter, once more, the individual with diabetes. With all this research, public health initiatives, and money being thrown around, such a person seems to have become just one more calculation in the equation, so as to maximize the happiness of the greatest number of people. And the equation is being worked out by the doctors, their professional organizations, and the government, based on research that does not account for individual patient choices.

But since when did a person become a number in a happiness equation? Since when did a person become merely a composite of statistical risk factors? Since when did a person lose all capacity for meaningful comprehension of the reality of their situation, and the ability to develop their own meaningful, individual response to their situation? Somehow, in all this, I became defined by diabetes, rather than being permitted the freedom to define my own response to the reality of my situation. Somehow, in all of this pressure to control diabetes, "I don't have any current complaints for which I would like to seek a doctor's expertise" lost preference to "the doctor would really like to see you now," presumably because they think I will fall apart at any moment OR that I am too incompetent to understand the complexity of my condition.

I apply two caveats here. One is that I understand individuals make bad choices, and individuals sometimes fail in their understanding of their situation. Individuals with diabetes are no exception to that rule. But that doesn't mean individuals with diabetes are necessarily incapable of making a reasonable response that happens to be different from public health initiatives directed at the treatment of their bodies. It also doesn't mean that doctors are responsible for controlling the behavior of a poorly-informed or bad-choice-making patient.

Because I know I am flying in the face of my doctor's recommendation (which should not be dismissed lightly!), I can't tell you how often I have sat awake at night over the last few months, wondering what I am missing, and whether I am being stubborn or unreasonable simply because I don't like my doctor's bedside manner (which is, admittedly, a huge burden to me). And the conclusion that I have come to over and over again is the same: I think I am about as likely to be hit by lightning tomorrow as I am to derive benefit from an office visit at this particular moment in time.

Finally, my endocrinologist is a very skilled physician. If I were having a problem with which I desired help, there is no doubt in my mind that I would happily seek out his expertise to assist with its treatment. It's just that, in spite of my ongoing health condition, the problem is managed about as well as I think it's ever going to be, and I don't see anything for which I am at risk that needs to be monitored or tested for right now (especially given how closely I am being monitored for hypertension and so forth by my OB at this point). I don't need his expertise, because I know just about everything about diabetes that is relevant for me at this point, my 31st week of my third pregnancy.

Again, I ask. Am I missing something? Since I don't need my endocrinologist's help to manage my blood sugars, why else would I go see him right now? Does anyone else feel like they are treated this way sometimes? Is my endocrinologist uniquely patronizing, or does this happen everywhere?

2 comments:

  1. I think it happens everywhere and I think it's root cause is that some providers (doctor's, DME suppliers, etc) view us as revenue streams rather than patients. It's not about our health or well being, it's about keeping their billing up, their affiliated labs busy, and making their pharma friends happy so they keep those perks. I had a doc tell me once that diabetics were the "bread and butter" of his practice. At least he was honest!

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  2. Fiona - thanks for stopping by! It had occurred to me that this might be a revenue-enhancing scheme. I just feel a little squeamish accusing individual doctors (including my own) about that in a public way, without having a good reason to do so. I always try to think, "what would happen if my doctor stumbled across this blog?" and try to be as fair as possible...even if that means holding my tongue. :)

    I also think, if doctors happen to make a lot of money because they do diabetes treatment well and their patients feel like their needs are adequately addressed, who really cares how much money it brings into their practice? It's only when the treatments, office visits, and procedures become unnecessary and the doctors become hostile to a patient who refuses to consent to them (such as myself) that I have a problem with it.

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