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Right Care Action Week — Change what we fear

Last night I talked with one of my partners about a few terrible cases of medical harm from unnecessary procedures.

He said, “John, people get this stuff done to them because they fear not being healthy. People are scared.”

My answer was that people should fear healthcare more than they do disease. That sounds like hyperbole, but it is not.

When you are sick, medicine is beautiful. It’s never been better.

But when you are well, you should fear getting stuck on the healthcare train. It moves fast. It’s hard to get off.

I’ve never been more frightened to order a test. Any test, even an echo, can get you on the runaway train.

It’s weird; the more techie we get in medicine, the more I focus on the history, exam and ECG.

My partner again: “John, when we treat people who are already well, all that can happen is we make them worse.”

He means two-times well is still well.

You may wonder how you know that you are well?

You don’t need an app or a biomarker. Don’t listen to the hype. All you need is a scale, a belt, and a Timex to time how fast you move from point A to B.

One of my favorite studies published this year showed that the best predictor of 5-year survival was self-reported health and walking speed.

Health is not complicated: If you move quickly and you grade your own health as good, your prediction is probably better than any doctor’s.

Don’t misunderstand this as a screed against prevention of disease. I’m for prevention. But you don’t need medical care for prevention.  Besides luck, avoiding diseases like heart disease and cancer turns not on tests, drugs, and procedures, but on basic lifestyle choices. It’s why we need parks, bike lanes and walkable neighborhoods more than we need cath labs.

When we change the culture of what we fear, we get closer to stopping overdiagnosis and overtreatment. We get closer to RightCare.


10 replies on “Right Care Action Week — Change what we fear”

I am 58 and a lifetime endurance recreational athlete.

vigorously a scale (165#) a belt (33′) and a Timex (fast). And my history (good health), exam (normal) and resting ECG (normal sinus rhythm) wworking fine.

Since I am almost 60. And since I have been working out vigorously for 40 years. And since many recent studies have shown a correlation between lifetime vigorous exercise and arrhythmia. I decided to get a “hyped” tech tool — a Zio Patch.

Thankfully, I made this decision. After wearing the patch for 14 days, it detected asymptomatic typical atrial flutter. After anticoagulation, I went to the cath lab. My EP performed a CTI ablation. And a potentially life-threatening condition has hopefully been eliminated.

I agree, most persons are their own worst enemies when it comes to scales, belts and Timex watches. But, respectfully, there are times when responsible people who make the so-called “right” choices can benefit from expensive medical technology even if their scales, belts and Timex watches are working fine.

The more likely result, of course, is that it wouldn’t have killed you anyway. Meanwhile, some other guy may have gotten a smartwatch that detected an incidence of asymptomatic atrial flutter, rushed to get an ablation, and wound up as a result with a devastating left atrial flutter that required a lot more ablating to stop. Glad all is well for you, but your comment is the cardiological equivalent of “If I hadn’t gotten that mammogram at 40 that found DCIS, and rushed off for a double mastectomy, I’d be dead by now.” The fact that some individuals have, or believe they have, good outcomes from aggressive treatment is not a sufficient basis for decision-making.

Dear Dr. John,

In mid-February 2015, at the end of the day of a first visit to an electrocardiologist (EC) here in NYC, I got an AF episode. I’d had three more by mid-March. “This is it,” I thought, “I’ll be back with my EC sooner than you can say Jack Robinson”. But by then I’d already been reading Dr John, and there was no way I would submit to RF ablation. “Isn’t there anything else I can do by myself,” I wondered.

I had titrated flecainide levels any number of times over the years, since I was diagnosed and first put on the drug in 1998, and always come up with the therapeutic dose of at least 250mg/day. And eventually I moved to 300mg/day. Anything lower turned out to be not robust enough, at the level at which I was drinking and at the weight I was carrying, BMI ca. 27. Even so, I’d have AF once a month, sometimes more.

The relative stability of this arrangement was disturbed when I changed dosage forms (not dose) from 3 x 100mg/day to 2 x 150mg/day – to avoid having to break one of the three 100mg tablets into two! I got a call from my cardiologist over the weekend to tell me to reduce the dose immediately. My blood work-up had shown the flecainide serum level to be in the toxic zone. It made sense. I was already experiencing what I took to be flecainide toxicity with incredible itchy knees and a rash that subsided when the dose was reduced.

Since mid-2014 the level had been reduced then to about 225mg/day, and I’d switched back to the 100mg tablets. I slowly moved the dose back to 250mg/day. But the number of AF episodes was increasing – hence my visit to the EC.

With the 4 AF episodes in February/March this year I decided unilaterally to increase flecainide to the maximum with the 100mg dosage form. I told my cardiologist what I’d done and asked for a flecainide serum determination. It was OK, at the maximum recommended level. Previously it had tended to creep into the toxic zone when measured with the 150mg dosage form.

Trust me, 2 x 150mg acts differently than 3 x 100mg tabs, my current regimen, taken 1 1/2 tablets twice/day. I believe the API spikes higher with the larger 150mg tablet, which is more friable and more like blackboard chalk than the 100mg tablet which is as hard as nails. So the excipients in the two dosage forms may be different, ergo different kinetics of API release. That’s my theory anyway.

Guess what, 8 months later, and I’ve not had an AF episode since the flecainide increase in March! I feel finally free of this monkey. I don’t know of course, but over the last 2-3 years my weight has gone from 163 to 146lbs, I exercise at quite high intensity 3x/wk, I try to ensure I never sleep on my back, and I don’t touch alcohol any more.

I’m 77 and feel good again. No aches or pains.

The manifestation of the changes we made was slow; but when change came it was sudden. It is as if no alcohol and gradually reducing weight allowed the increase in flecainide to work unimpeded to allow the heart’s electrical system to repair. My fantasy, but I know you have written about just this.

It was your blog that brought all this together for me, gave me a fresh perspective on management of my AF. Specifically, your underscoring the facts of AF, that it is a symptom, more than it is a disease.

Thank you, from my heart,

Roger Lipman

Near Perfect Post.

You missed something critical though- the same applies to the chronically ill patient.

Our daughter has always had a lot of chronic health issues but was functional until puberty. So she started seeing Specialists. Who ran one test after another, prescribed one medicine after another, referred her to another Specialist… pretty soon they found a Mitochondrial Depletion(and lots of other issues) – and given her issues since birth? Not a good prognosis.

IF we had followed the standard recommendations by the Support Associations that poor kid would likely be dead. The amount of medical care is insane! I am not sick but after a year of helping her to weekly or often daily appts(waiting rooms, and waiting, and waiting rooms and sick contagious people) I was exhausted and sick, it was a marathon that would have nearly killed the most energetic parent. Let alone appropriate for a patient who was clearly medically fragile.

Each Drs visit exposed to her to more diseases(major medical centers), each trip exhausted her, each medicine caused another side effect needing another medicine(many medications are mito toxic and most specialists don’t know which or possibly inappropriately feel the med is worth the risk)..

As we watched her get worse, we all decided to opt out.

After a few months of steering clear of tests,follow ups, meds and Drs- she stabilized.

We changed her diet, we changed her environment. Most importantly we changed our attitudes toward medicine.

At age 20 she is walking. She is limited in her daily life, but needs no tubes, no oxygen, no meds, no therapy and she is holding steady. Her cognitive function continues to be unaffected. Her kidneys have actually improved despite a diagnosis of Secondary FSGS 4 years ago… Apparently her mitochondria prefer lots of rest, good clean chemical free food and a good environment to constant medical attention.

She is not cured. She is still sick, but now it is just her disease making her sick, not the Dr. Train. She has 2 Drs. she follows up with as needed and that is it.(annual ) She is doing far better then predicted.

So, your blog post applies to both the healthy and the chronically ill- Less is usually more when it comes to modern medicine.

Great comment. Thanks. Indeed our mitochondria probably do love the basics. Also, your experience confirms our body’s own healing abilities. Abilities the medical field too often doubts.

Age 69, a year ago, I suffered sudden cardiac arrest. Thanks to bystander CPR, excellent EMS and ICU I am still around. I still ride a bike but not centuries + any more. That is considered unwise with LVEF of 35-40%. :<) ,Your tape measure, scale and fitness level all said I was doing GREAT, but long in the past alcoholism, drug abuse, peridontal neglect, sleep apnea – who knows? — seem to have left me compromised. Had I had a lot of the tests that seem excessive — or even somehow harmful — perhaps the SCA a year ago would not have happened? Or perhaps it would have been addressed immediately with an ICD (which I now have) and I could have avoided heart muscle loss? Or maybe the heart muscle was already damaged? Not really complaining because I am doing pretty damn well for LVEF of 35-40%, on vacation cycling in West Texas as this is written, but I wonder where I would be if I HAD been "overtested?"

I feel I have a questioning attitude such that information does not automatically mean overtreatment. The bigger problem is not information, but the abuse of information.

Speaking just for me: I would like every (benign) test that could possibly be relevant to my condition and then trust me to ask hard questions before taking a pill or going under the knife.

Don in Austin

Just to clarify a little: It seems someone who is aware of the pitfalls of over-treating is almost of afraid of too much information: A PSA reading is high, this leads to a biopsy, the biopsy leads to surgery and radiation when “watchful waiting” would have been preferable. BUT, the problem is NOT with having the PSA number but with a prevailing dogma that the number automatically demands further action even that which involves risk.

I understand its really hard to fight this, but it seems a shame to fall back on not having the number as the answer. IF information is used wisely there can be no such thing as “too much information.” As I found out, there is a lot more to cardio health than a reasonable belt length, a reasonable weight, and the ability to ride a bike keeping up with the youngsters.

Don in Austin

Good comment. You are right. Information should not necessarily get you on the train. But it often does. The inventor of the PSA has called what happened The Great Prostate Mistake.

Dogma is strong. But I’ll continue to fight it. There are others too who are speaking out. It’s one of my hopes with social media–that this new platform can be a force for good, a force for wisdom, a force for compassion.

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