Blaming the patient…and the philosophy of caring for people with atrial fibrillation

More than a few commenters recently noted something disturbing in my writing. They said my words are increasingly taking a blame-the-patient tone. That bothers me. Of all people, I know about making imperfect health choices.

These comments got me thinking about striking the right balance in writing about health, say, between apathy and defeatism, (oh well, here is the script, it is hopeless), and overzealous boot camp instructor, (you are lazy and weak, 100 more pushups, then to CrossFit.)

It gets even trickier with atrial fibrillation–a malady that affects people in many different ways, but is so clearly lifestyle-related. We know more than we used to about AF, but we still don’t know essential things.

Consider…

We know the brain and heart are connected; so it’s clear that when the brain is unsettled the heart may be as well. But what is the connection? How does personality type, frowny faces and stress management skills connect to arrhythmia triggers? Something has to trigger those focal impulses. A colleague once wrote to me that he felt neural imbalances were more important than inflammation as a cause of AF. Ok, but the neural ganglia around the heart are connected to the brain.

Then there are the genetics of AF—tall, northern Euro, Type A’s. Sure there are strong genetic ties, but actionable gene information is far off in the future. African-Americans, for instance, have much lower rates of AF despite having a higher prevalence of risk factors, such as diabetes and high blood pressure. Why is that? I wonder—are the genes that predispose to AF inherited along with those that make one think Ironman triathlons are a good thing? (Grin, athletes, grin.)

And of course there is the lifestyle component. Obesity, high blood pressure and sleep disorders stretch and scar the atria, but not every patient with lifestyle-related diseases gets AF. Why not?

Alcohol intake associates with AF in a linear way, but not all who drink get AF. Remember, alcohol also affects the brain, which is connected to the heart.

Finally, we know inflammation plays a role in AF, but inflammation is essential for life. Why do some pneumonias and recoveries from surgery induce AF, and others do not? How much inflammation is too much?

See. We don’t know essential things. I could go on.

The other reason I harp on lifestyle factors is that AF treatments are so lousy. It’s hardly hyperbole to say that AF gets most dangerous when doctors get involved. What is a side effect of a rhythm-control drug? Answer: Sudden death. And, tell me, how is making 60 burns in the left atrium, done to isolate areas that may or may not be driving AF, a good therapy?

The point is that it sucks to have AF. But it also sucks to take AF treatment. So, if AF were unnecessary, this would be a good thing.

If you look at population maps and overlay wealth and rates of obesity, you see clearly that AF is a disease of riches. The more we have as a society, in convenience, in expectations, in longevity, the more AF we can expect. Maybe such wealth distorts the view of what is “normal.”

Here, I will close with a note from Joe, one of my many fine commenters.

At the risk of attracting ire, I’ll point out that most of us (myself included) are very bad at objectively evaluating our own situation. We look around the office and say “I’m not working too hard” when all of us are burning the candle at both ends. We look around the restaurant and say, “see, my diet isn’t so bad” when all of us have 1300 calories on our plates. We look around the gym and say, “see, I’m not that out of shape” when we’re really seeing a typical cross-section of our obese society.

Modern life has eliminated most of the limiting mechanisms that slowed us down as our bodies evolved. We work and play well into the night, we have constant access to abundant food, we typically move via machine instead of under our own power, and we enjoy a longevity of life that is unprecedented. All of this seems ‘normal’ to us, but it’s all very abnormal over the arc of human history.

Simply put, our bodies aren’t designed to handle all of this. Our version of ‘normal’ is quite unusual.

I know that small minority of AF patients exists. I strongly suspect that more than a small minority think they are in the small minority.

Ladies and gentleman, I pledge to stay mindful of tone going forward. Human disease, especially AF, does not fall into discrete boxes.

Yet there is no denying that how we live, the choices we make, affect our health. And that great harm has been done because modern medicine too often ignores this fact.

JMM

9 comments

  1. How unusual and refreshing to find a doctor who is willing to publicly critique major procedures involved in his own speciality, rhythm control and ablation, and speculate that patients might just possibly have a role to play in their own fate.

    Lately I’ve read some really interesting information on the vagus nerve, which apparently can be influenced by the gut microbiome. For instance, there are recent articles mentioning a link between lactobacillus rhamnosus and emotional state, mediated through the vagus nerve. This is really intriguing. It could be that AF sufferers have a particularly dysfunctional array of gut critters, which potentially could be “fixed” by probiotics or microbiome transplants, (similar to fecal transplants for c. difficile, etc.)

    Science and medicine seem to be ever-evolving, and it’s wise to always keep an open mind; an especially welcome trait in medical doctors and medical researchers.

    Stay honest, Dr. M. I have learned more from your blog than from any other single resource, including (especially) my own electrophysiologist.

  2. Thanks for your thoughtful (as usual) writing. A few comments based on my experiences.

    Although “60 burns in the left atrium” does seem primitive and almost barbaric, it has done wonders for me. My afib was persistent and because of naturally low blood pressure I couldn’t take the usual rate-control medications. (And I wasn’t willing to take rhythm-control medications that, as you have noted, can produce potentially devastating side-effects.) Raking leaves for 10 minutes had my heart rate up to 180bpm. My ablation ended my afib (I know, it may return) and allowed me to live my life again. Of course it had risks, and I definitely would prefer a less dangerous and more reliable treatment, but don’t downplay the value of what you do to help!

    I’m on board with your lifestyle arguments, but don’t forget how difficult it is for people to make changes to their lifestyle. Think of those who have had a heart attack and continue to smoke. I’ve found it pretty easy to cut out caffeine, reduce alcohol to one or fewer drinks per day, keep my weight low, increase my exercise (but not to Ironman levels :-)), etc. I also have worked hard to reduce stress, but it’s less easy to know whether this is really happening! I know whether I’ve had a glass of wine, or whether I am gaining weight. I don’t really know whether I’ve been effective at reducing my stress level.

    Maybe as important, it would be great if there were solid evidence about lifestyle factors. Right now much of the evidence seems to be anecdotal or based on somewhat weak studies. Hopefully in the next several years there will be more solid evidence to guide patient choices.

    Thanks again for sharing your thoughts with fellow doctors and patients. It’s really helpful. And don’t forget that although therapies (both “medical” and “lifestyle”) can improve, you’re already doing a lot of good in your medical practice and in your writing!!

  3. Great article, I forwarded it to my 28 yr. old son. Stress and life style changes need to start in our 20’s! or earlier. I work as a nurse in a white middle-upper class suburban middle school and the amount of diagnosed anxiety is staggering. What is our culture not getting right, such that 6th graders are so anxious that they are on medicaton or just simply can’t function.
    I’m wondering if the gist of this article can be applied to the condition of Heart Block as well? If stress and anxiety can contribute to AF, could stress/anxiety disrupt the electrical system enough to cause Heart block?
    Keep up the great writing Dr. Johm M.

  4. I recall my first visit for this condition with the cardio. He was adamant about my lifestyle, drinking and weight being a contributing factor. He then proceeded to line up a regimen of meds for me. I left wondering why he started out possibly addressing the root of my problem and ended up treating my symptoms? The other pressing question I have is why is conventional medicine so opposed to natural healing? The obvious is that they are not paid that way. However I am still of the opinion that my doctor certainly wants me to get well, so I m guessing the real reason could be that it’s much harder to use alternative medicine because it requires lifestyle changes.

  5. Great stuff Doc! As a sufferer of proximal AF that may be progressing to persistent I’m very appreciative of your writing.
    So far I am learning of atrial remodeling and the progression of the disease.
    My question: Can the risk factor modifications you endorse facilitate any sort of atrial remodeling? I suspect the answer may be “yes”? If so, what about exercise? I try to get six too eight hours of fairly vigorous exercise in if I’m nit having a bout of AF. My passion – like you – is mountain biking. As you know, there is not a lot of moderation involved in some of the necessary climbs. Occasionally I will “flip out” during a ride, and now find myself taking metoporol upon the successful completion of a ride to prevent an episode. I’m wondering if this affliction can be managed in this fashion, and possibly improved if the atrium can be remodeled.
    Thank you!

    1. Wealth is a tricky thing.

      One the one hand, most of us look around and see others with much more ‘stuff’ than we have and say we’re not rich. We’re still working, or clipping coupons, or keeping an eye on bills.

      On the other hand, our houses are warm in the winter, cool in the summer, and we don’t think twice about wasting clean water on our lawns. We (in America) spend much more time being worried about eating too much than not having enough to eat.

      Even though it may not always feel like it, almost everyone in America today is fabulously wealthy by both global and historical standards. Our collective wealth is a tremendous positive, but it’s also the cause of some of our biggest public health issues.

      When public health people say something is related to ‘wealth’, they don’t mean yachts and caviar. They mean not worrying about food or clean water, and .

  6. I have paroxysmal AFIB; had my first bout last year and was taken to the local ER where they swung the hammer high and hard. I left the following morning in NSR and stoned out of my mind from the previous days IV beta-blocker, 2 injections of Lovanox, 2 doses of oral BB, a squirt of digoxin in my IV, and godknowswhatelse. My electrolytes were off due to the hot weather, my strenous job in a supermarket, and a nasty cold the week before, and being told to return to work before I had fully recovered from my cold. I had a sneaking suspicion that it was all related. I’m middle-aged, no drugs, no smoking, no alcohol. I’m not obese. I’m a former marathoner. I’m also low-income with lousy insurance, which hampered access to decent follow-up care.

    I wasn’t seen by a cardiologist until three weeks later. In the meantime, I did my homework; critically reading journal articles, digging through nutritional information regarding electrolyte imbalances, lifestyle factors, and otherwise educated myself.

    The cardiologist spent all of 15 minutes with me, told me lifestyle factors had nothing to do with Afib, glanced through my hospital records that I hand-carried to the appointment and told me my heart was fine. He reiterated that lifestyle and stress levels had nothing to do with Afib, and if stress were a factor, we’d all be in Afib. In other words, I was completely brushed off.

    Seems that we patients are either blamed unfairly or blown off completely when we are the ones to bring up lifestyle factors and possible contributors to the initial episode. We can’t win. Needless to say, I didn’t go back to that doc; I wanted somebody who could work in partnership with me. Because of the new insurance regs under the ACA, I got defaulted onto MedicAid, and the selection of knowledgeable EPs/Cardiologists is abysmal. I’m left to navigate this wilderness on my own, even after last week’s bout with AFIB (hot weather, stress from job loss, etc. etc. etc.).

    The takeaway? I think most of us would love it if docs could at least meet us halfway; not blaming us, but not ignoring us when we take the time to educate ourselves and want to actively participate in our care.

    Thank you for this blog; it’s one of the most down-to-earth and informative resources I’ve read on Afib.

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