My body as profit center …

[Treehugger]

I haven't posted here in a long time, but would like to discuss something that has happened (or has been happening) to me anonymously among intelligent folk. And I will try to make a long, involved story as simple as possible.

I am scheduled for cataract surgery in my right eye at the end of January. The operable cataract in my right eye is not due to aging (I am in my mid-50s) or general health problems. Instead it was the entirely expected result of macular hole repair surgery I had in my eye almost a year ago now.

I had quite a hard time finding a cataract surgeon I felt comfortable with (misdiagnoses; bullying personalities, etc.). But I need to get this rapidly evolving cataract taken care of and have finally found someone good enough. Not great however because they are totally overdoing it on the meds and appointments (not just my opinion — both national ophthalmology professional organizations officially recommend doing less in terms of meds and pre-procedure visits thsn these guys are doing.

Most annoying to me is that they are requiring any me to go to my PCP for a full physical before the procedure! Both national ophthalmology organizations explicitly state that a full physical is not recommended before cataract surgery. Studies have shown that it is of zero medical value.

Cataract surgery is a very simple 10 minute procedure that does not require general anesthesia, only sedation and a topical anesthetic. In recent years, I have had colonoscopies, endoscopies, a bronchoscopy, plus a victrectomy (for the macular hole repair). All of these involved sedation and lasted more than 10 minutes. Yet, no one breathed a word about a physical with my PCP for medical clearance before them.

I protested to my ophthalmologist, but the surgery coordinator did her best to act like the health robot who will sure,y replace her one day, simply repeating over and over again that it was office policy that everyone get a physical. Given that this, the fifth cataract surgeon I consulted at least seemed very competent and professional, I decided to bite the bullet and just get the physical.

Today, I saw my PCP for saud physical. All my lab work was normal, my blood pressure was 110/70 <takes bow>. But I waited and waited and waited in the exam room. Finally, the PCP appears. After the initial pleasantries, he comes out with it: My EKG is an abnormal and I need to see my cardiologist.

I asked him to show me the EKG and point out the abnormalities. He pointed to a few beats and said that they were irregular. Given that I have had some problems with benign arrhythmias in the past (before I made some lifestyle changes) and that I tend to research the heck out of everything, I know how to read an EKG. I am not an expert, but I know the basics and a little more. I told him I didn't know what he was talking about. I could clearly see P-waves in the beats, so not afib. There were definitely no PVCs or PACs. It's true the beats looked a tiny bit different fro each other, but this is normal. We aren't machines. Our heartbeats aren't all exactly the same.

Then he moved to another area of the EKG and said "this interval i too long." I said, what? Are you referring to the QT interval? PCP: "Yes, it is too long." Me: "Are you saying I have long QT syndrome?" I told him that I did T have it and the interval was not too long. I counted the little boxes to show him.

Finally he said: Would you mind seeing a specialist anyway? And I said: "Actually, yes, I would mind!" PCP: "I don't understand why you mind." Me: "I mind because there is no indication to see a specialist. The EKG is norms.."

This ridiculous conversation went on a little while longer. But finally, I just got him to agree to sign the authorization.

I am still feeling outraged about this. My PCP out-and-out lied about my EKG. He just wanted me to see a specialist ... just because ... because?  It can't even be ass-covering, but the results were flat out normal. (I took a picture of my EKG w my iPhone and later posted it to a couple of heart rhythms Facebook forums simply asking if it looked abnormal or normal to them and every basically said as normal as it gets). So, it must be to drum up business.

Or maybe he is reacting to a letter from my bullying electrophysiologist whom I no longer see.

Ok, just a wee bit more. I was having some problems with arrhythmias back in 2019 and was worried about afib, so I went to an electrophysiologist. He ordered a pretty heavy work-up involving lots of testing. I did the 30-day event monitor which showed that the arrhythmias were not afib, but instead benign. The rest of the testing got put off due to Covid and in the meantime I started an exercise program which got rid of the (benign) arrhythmias.

Since I am slim (and now really in shape), don't smoke or drink or have a family history of coronary artery disease, have normal blood pressure, cholesterol levels, etc. and most importantly no longer have to benign arrhythmia I was having (so not even any quality of life issues) I just decided I didn't want to go back to the electrophysiologist. However, incredibly, they refused to cancel my 6-month follow-up appointment and absolutely "needed" to see him no matter how I felt. I told them I wasn't interested in more testing, but still they refused to cancel it. So, I had a virtual visit with this electrophysiologist. He said that I "needed" to get a nuclear stress test. I simply refused. I eventually got him to admit that he thought it was "highly unlikely" that I had any serious blockages, but that I "needed" the test as a baseline in case I had problems in the future. Bottom line: I didn't need the test. I refused again and he got incredibly angry at me accusing me of being irrational and "not caring about my health." He told me the was going to send a stern letter to my PCP saying that I needed this test as well as to my oncologist (of all people, as if my oncologist is going to listen to him.)

Anyway, I believe that my PCP lied to me about my EKG results so he could pester me about going back to the electrophysiologist. In essence, he was trying to hold my clearance for eye surgery (which was itself unnecessary) by manipulating me into getting even more unnecessary care.


I feel like instead of working for me, the health system is working around me and trying to use my body as a cash-generating device. But maybe this is pushing the interpretation too far.

In any case, I am just so upset about all of this.

Has anyone else had other baroque health care stories like this? Have you had a doctor lie to you? ShoulcI not be outraged?

[dismalist]

I feel like instead of working for me, the health system is working around me and trying to use my body as a cash-generating device.

It is.

The nature of the contract allows this -- fee-for-service, courtesy of the American Medical Association, ca. 1911 [?] and still entrenched in the federal medical process. Combine with asymmetric information [Madam, you don't really need that uterus.]and one can go to the verge of deceit. And let's not forget defensive medicine on account of absurdly high malpractice awards for pain and suffering.

We could have different contracts and still have self-employed doctors.

The existing US health system promotes the financial health of doctors.

[mamselle]

I've worked in hospitals as an EA, a unit/ward clerk, and an AP desk worker.

Yep.

1. PCP first: It's in part the effect of the insurance business on how hospitals bill. They're capped at so many, say, Chest X-Rays, so many ultrasounds, so many thises, so many thats, under their original contracts, so they need to push up their procedure numbers to show a need for the next level of capacity, to increase the payments they request.

It's also to do with litigious patients who might sue if you overlook something, so everyone's covering their potential for errors by over-testing.

At present, with Covid taking over many hospital departments, and running up some procedures but not others, they're possibly trying to "make up for" a reduced number of procedures in one area by an increase in another area that can be shown to be or made to seem to be related to being extra cautious either for Covid-related, or other, potential issues.

They may want to be especially sure that your heart issues aren't going to affect surgery because even the slightest delays can tie up the OR for the next case, and OR minutes, always precious, can be like gold when a system like the US Healthcare wagon is wobbling about as badly as it is on one axle.

It could even be a way to put off the surgery before they have to say, "Sorry, we've been instructed to delay all non-essential OR procedures until the pandemic clears" or something similar.

There are various ways in which it really could just be considered a reasonable abundance of care, but there are too many other variables at present to discount the other possibilities that occur to me just in this quick, off-the-top-of-my-head response.

You did well to call all the vagaries of interpretation and insistence your PCP was spouting.

There are very good doctors and specialists, but they generally listen to patients and admit they might be wrong--at least from time to time.

Maybe he figured, early in the year as it is, he'd already had his "one wrong idea" for 2022...

2. Re: the electro- guy, that's different. I'm guessing he's put (these are all male, and you're female, right?....) a note that you're "Non-compliant" in your chart, and that's where the trouble is coming from.

That, and "drug-seeking behavior" can give people fits for the rest of their lives: I got the latter once, even when (as I think I've mentioned before), I merely asked for Eurythro instead of Amoxy for my bronchitis because everyone prescribes Amoxy first (it's cheaper) and I knew by past experience it didn't touch the bronchial bugs I usually carried around (and did for awhile afterwards, until an observant dentist a year later realized I had an impacted wisdom tooth with a roaring abcess, and cleared out the infection that kept driving the cycle).

So--I'd ask about it directly. You'll get further with your PCP than the electro- fellow, who lives in a silo and probably doesn't answer to anyone as long as he meets his procedural quotas and doesn't do anything bad (like anything that leads to a death. Beyond that, there's little oversight). Specialists get two, even three, errors per year (and in their own minds, they never exhaust these).

If you say to your PCP, "Is there by chance a notation in my chart that suggests I'm non-compliant?" and get a "um...yes." you'll know.

In fact, you can and should ask for a full copy of your chart, updated, and then ask for copies of the notes once they're generated (usually by the end of the day or the next day before COB under normal circumstances, although some places are not normal right now, so it might be longer).

3. All that said, it still behooves all of us to recall that healthcare workers are working in fear of their lives because even with masks, vaxxing, boosters, and other precautions, they're in a dangerous and worrisome situation fueled by idiots who think they know better than anyone.

They're fried, they're tired, they're scared, and they're up against impossible conditions, with more dropping like flies (and sad to say, working with more idiots who think they know better than the infectious disease docs in their own hospitals and clinics, too, probably, and will soon have to leave, putting the rest at even greater risk.)

And they have no idea what they're bringing home to their families, or what other caregivers they have to hire are bringing to them, either.

So, be clear, but go easy. Figure out what tone speaks "mercy seasoning justice" and go for that.

M. 

[Treehugger]

Thanks, Mamselle!

I like the idea of asking for a copy of my chart. But let's say that it does say I'm "non compliant?" What recourse donI have. I mean, I don't just write back and say: "No sirs, I am completely compliant to what my heart and mind tell me." LOL, I don't think that will help anything. And it's not like I am going to start being "compliant" when I don't want to be, just so nothing else is marked in my chart.

[mamselle]

It can help you set your tone, plan your avenues of discussion, and if your PCP is able to have the conversation serenely, you could even point it out and explain the situation from your own perspective and see if he might enter a statement mitigating it somehow.

He can't take it back for you (i.e., big no-no to overwrite someone else's notes) but they're supposed to read through a chart every time they see it, at least generally, so someone else in, say, another department, might see a "non-compliant note" first, but then read a mitigation later and relax (a bit).

Or it could help you and him both see more clearly, together, that you can and do read your chart with a degree of intelligence and informed interest, you're not just looking up Mayo clinic websites right and left and wildly misapplying them (as some do).

You should always, anyway, have a chart copy of your own in case you need a sudden referral and the copying mechanisms are snafu'd up in the hospital (too many folks need them for referrals, too few staff to do the work, etc.)

It also makes it simpler if you go for a second opinion; some really retentive folks will hold a chart hostage trying to get you not to do that (the ones who might be shown up as wrong are sometimes the culprits, other times it's just those whose egos are super-sized, but are actually very good clinicians and don't want you to waste time and money if they're right.)

But do be careful about being too sure that all your good efforts, important as they are to your ongoing health, might still not stop all the issues the PCP is worried about.

You don't want to talk him into gambling on being wrong.

M.

[AmLitHist]

Sorry to hear your story, Treehugger.  FWIW, ALHS has had similar "you MUST get this test, NOW" experiences over the past decade of his various ortho surgeries. In one situation early on (i.e., before we became old pros at all this), he was sent for a pre-op heart cath, at which time the doc who did it actually said, "So, WHY did you come in for this again?  Your arteries don't have a sign of anything wrong with them."  As time has gone on, I've become much more "OMG, there's that wife again," and more outspoken, both on his behalf and on my own. I have no shame; I don't mind being "that wife/patient."

I wanted to say also that I've just been getting my spring classes ready, and your post reminded me of a New Yorker article I use with my Comp I students to work on their critical reading and analytical skills. You might find it interesting, as well (though it's a bit older, it's actually predictive of what you and we have seen in our own experiences). It's available in EBSCOHOST for free.

Gawande, Atul. "The Cost Conundrum." New Yorker, vol. 85, no. 16, June 2009, pp. 36–44.

ETA:  Don't get me wrong--I'm thrilled to have insurance to pay for the various things we both need to have addressed, and also to have the PCP and team of doctors we do now, who tend to hear our questions and objections and talk them through with us. If, after those talks, we feel the tests are warranted, fine, we do them.  But I had two cataract surgeries a week apart this summer, and all I needed was a baseline EKG (since I hadn't had one in 30 years), and it was my PCP who wanted that (not the eye surgeon).  So I do feel for you being put through the wringer this way!

[mythbuster]

A very good friend of mine who is an MD once told me the following. There is no such thing as a healthy person. They just haven't been worked up enough.

Our entire health care system is predicated on this idea. Also, most doctors really hate educated patients. They just are not trained to be able to explains that whys and hows behind their prescriptions/orders/edicts. The good ones can, but they are really hard to find.

I wish you the best of luck finding MDs whoa re not offended by you being knowledgeable.

[Treehugger]

mythbuster — I agree. There is this new medical philosophy that you need to be constantly concerned about what could possibly be going wrong in your body, then doing all the recommended screening. So, health is now redefined as always worrying about possible hidden disease.

This came out pretty clearly in part of my argument with my electrophysiologist. I got him to admit that he would be "very surprised" if I had any serious coronary artery disease, but then he continued on with " .... but we can't know for sure unless we look." I told him I was perfectly satisfied with "not knowing for sure," a "highly unlikely" was good enough for me.

At this point, he was pretty upset and came back with: "What?!? You want to leave your health to chance?!?"
Me: "What? Are you suggesting that if I get the stress test, I will no longer be subject to chance? Seriously?"  I fully admit I said this in a mocking way (mamselle would surely not approve). I am bad. This is when he flew into a rage and promised to write letters to a bunch of my other doctors. Bad, bad treehugger. 

[Treehugger]

Sorry to hear your story, Treehugger.  FWIW, ALHS has had similar "you MUST get this test, NOW" experiences over the past decade of his various ortho surgeries. In one situation early on (i.e., before we became old pros at all this), he was sent for a pre-op heart cath, at which time the doc who did it actually said, "So, WHY did you come in for this again?  Your arteries don't have a sign of anything wrong with them."  As time has gone on, I've become much more "OMG, there's that wife again," and more outspoken, both on his behalf and on my own. I have no shame; I don't mind being "that wife/patient."

I wanted to say also that I've just been getting my spring classes ready, and your post reminded me of a New Yorker article I use with my Comp I students to work on their critical reading and analytical skills. You might find it interesting, as well (though it's a bit older, it's actually predictive of what you and we have seen in our own experiences). It's available in EBSCOHOST for free.

Gawande, Atul. "The Cost Conundrum." New Yorker, vol. 85, no. 16, June 2009, pp. 36–44.

ETA:  Don't get me wrong--I'm thrilled to have insurance to pay for the various things we both need to have addressed, and also to have the PCP and team of doctors we do now, who tend to hear our questions and objections and talk them through with us. If, after those talks, we feel the tests are warranted, fine, we do them.  But I had two cataract surgeries a week apart this summer, and all I needed was a baseline EKG (since I hadn't had one in 30 years), and it was my PCP who wanted that (not the eye surgeon).  So I do feel for you being put through the wringer this way!

I love Atul Gawande. He is one of my favorite medical authors. Have you ever read his Being Mortal: Medicine and What Matters in the End? If not, I think you would enjoy it!

Thanks for the anecdote. It reminded me of another strange medical experience of mine. In 2019, I was diagnosed with squamous cell carcinoma in a few upper thoracic lymph nodes with no obvious primary. I would never wish an advanced cancer on anyone, but for anyone who hates medical testing, a cancer of unknown origin is a whole nother nightmare. Diagnostic test after diagnostic test after diagnostic test. Over the course of two months, I had at least two CT scans, a PET scan, an endoscopy, a bronchoscopy, three biopsies, lots of blood tests and three laryngoscopies.

After the first CT scan, which revealed the three lymph node tumors, the PET scan, which confirmed that they had a lot of metabolic activity, and the first biopsy, which showed squamous cell carcinoma, none of the other tests showed anything at all. And yet, they just wouldn't stop the testing. I had one oncologist say that he was going to give me a laryngoscopy. I told him I had already had three negative laryngoscopies over the previous six weeks, but he launched into the "but I really need to give you a laryngoscopy spiel," and I just said No. If three other oncologists (including two at a national cancer center) couldn't find anything, that is enough. Done with the laryngoscopies.

Then the oncologists at the national cancer center recommended exploratory surgery. I asked them if they honestly thought they would find something. They said: "No, it is very unlikely, but we want to leave no stone unturned." I told that they could leave that stone unturned.

And, finally, we come to the most jaw-dropping push for overtesting of all. One of the enterprising oncological surgeons at the national cancer center went through my PET scan very carefully. When I went in to see her, she pointed rather triumphantly at a tiny glowing spot in one of my kidneys: "That could be our primary!" she said. "I have already called urology and they are going to set up an appointment for you do a specialized renal CT scan."

I went home, did really not that much research and saw that the chances that the tiny spot on my kidney was the primary were extraordinarily close to zero. So, when urology called to set up the scan, I said I wanted to speak to a urologist first (before having yet more radiation beamed into my body).

Here is where it gets really weird.

First, I saw a resident.

Resident: "I have been looking over your file again and again and scratching my head, but I just can't figure out why you are here. Not only is it almost unthinkable  that this lesion is the primary for your cancer (squamous cell carcinoma in the kidneys is extraordinarily rare, like rare rare, like 24 documented cases ever worldwide. Moreover, most of those were extremely aggressive and basically untreatable while my cancer seemed to be not too aggressive), but it is highly unlikely to be cancerous at all. Besides, we never use PET scans to diagnose kidney cancer ... the false positive rate would be sky high!"

So, I was happy about that news. It also jived with what I have read.

But in comes the senior doctor ...

Senior doctor: "You really need to get this renal CT scan. This could be your primary!"
Me: "But this lesion is small. Plus it has been visible and unchanged in my abdominal scans dating back four years! Wouldn't it have evolved at least a little in four years, if it were cancer.?
Senior doctor: "We can know nothing whatsoever about this lesion unless you get a renal CT scan."
Me: "But we know it's tiny."
Senior doctor: "We know nothing at all. It could be huge! You need to get the renal CT scan."
I was left thinking WTF? What?

So, although I did not want the renal CG scan, they went ahead and put it on my calendar anyway. I called and told them that I was busy that day and I would call them back to reschedule. Then, I didn't call them back. So, they put that renal CT scan back on my calendar and sent me a letter about it. So, I called them (again) and told them to take it off my calendar again ... and told them explicitly in a very serious voice not to put the scan on my calendar a third time. I told them I would call them if and when I was interested in having the scan, which probably wasn't going to be for a very, very long time.

Within a year this pesky kidney lesion "resolved" on its own, so ta da! One more silly test avoided.  But that senior urology oncologist — wow!

[mamselle]

Did the primary ever show up?

M.

[Treehugger]

Did the primary ever show up?

M.

No, no primary has shown up. And I'm doing just fine two and a half years later. Yay!

[AmLitHist]

Treehugger, I've gotten a chest CT every year for 3 years now--and my spouse had the same, about a decade ago--because we have several small dark nodes on our lungs. I'm a former smoker raised with a father who smoked and died of lung cancer; spouse, never. His spot was initially seen in the edge of a x-ray for one of his spinal surgeries, mine, in a diagnostic abdominal x-ray of my gallbladder.

Our current PCP did my third and final CT this year, not because he was worried, but since it had shown up 3 years ago on the gallbladder film, insurance insisted on the series of 3 annual CTs to cover everyone's *ss, should I develop lung (or some other) cancer down the road, lest I come back and sue for a missed early diagnosis. The fact is, this used to be hog country, and it's typical for anyone who's lived here very long and spent any time outdoors to have these nodes, related to some sort of dust or whatever residue from the hogs (and ALHS even worked for a local hog farmer for several years when we first met).  Our PCP has confirmed this.  We've all adopted our non-changing nodes as pets and moved on.

The irony: Cigna refuses to pay for pretty much everything under the sun on a first submission for certification; we have to go through the motions of appealing and eventually getting most tests and procedures approved. And we won't even talk about the various knock-down-drag-outs I've had with them over my insulin and other diabetes meds. Yet for something that doesn't amount to anything, they insist on my having these tests. Go figure.

Of course, everybody in my family for generations dies with cancer, so it's pretty hard to get me too wound up and worried about it. My sister and I have the motto, "Every day without a diagnosis is a good day," and even when it comes, we'll worry about it then. Still, my morbid sense of humor says, "I'll die of cancer anyway, Cigna--I'll show you!"  :-)

[mamselle]

The insurance-denial-runaround drives desk workers crazy.

I worked in a Repro Endo office for a year and a half, and we're in a state where coverage for a number of related procedures is mandated.

It's not elective, it's mandatory.

But we'd have to go through the whole rigamarole everytime an HSG or a CXR had to be done, too....three times and it's OK seemed to be the mantra.

I and the other clerk believed they just reflexively denied coverage until someone called and fussed at them.

Maddening.

M. 

[Ruralguy]

In defense of some of these doctors, they were probably just solving a mystery in front of them and thought that if they solved it, then maybe they could save a life.  They started to go down rabbit holes and ignoring cost to you, but most probably had good intentions. Oncologists are between a rock and a hard place---care costs a ton, but if people deny it or get denied it, then they could be in real trouble.

[Treehugger]

Treehugger, I've gotten a chest CT every year for 3 years now--and my spouse had the same, about a decade ago--because we have several small dark nodes on our lungs. I'm a former smoker raised with a father who smoked and died of lung cancer; spouse, never. His spot was initially seen in the edge of a x-ray for one of his spinal surgeries, mine, in a diagnostic abdominal x-ray of my gallbladder.

Our current PCP did my third and final CT this year, not because he was worried, but since it had shown up 3 years ago on the gallbladder film, insurance insisted on the series of 3 annual CTs to cover everyone's *ss, should I develop lung (or some other) cancer down the road, lest I come back and sue for a missed early diagnosis. The fact is, this used to be hog country, and it's typical for anyone who's lived here very long and spent any time outdoors to have these nodes, related to some sort of dust or whatever residue from the hogs (and ALHS even worked for a local hog farmer for several years when we first met).  Our PCP has confirmed this.  We've all adopted our non-changing nodes as pets and moved on.

The irony: Cigna refuses to pay for pretty much everything under the sun on a first submission for certification; we have to go through the motions of appealing and eventually getting most tests and procedures approved. And we won't even talk about the various knock-down-drag-outs I've had with them over my insulin and other diabetes meds. Yet for something that doesn't amount to anything, they insist on my having these tests. Go figure.

Of course, everybody in my family for generations dies with cancer, so it's pretty hard to get me too wound up and worried about it. My sister and I have the motto, "Every day without a diagnosis is a good day," and even when it comes, we'll worry about it then. Still, my morbid sense of humor says, "I'll die of cancer anyway, Cigna--I'll show you!"  :-)

I think I'm going to steal your motto! :-)

Sorry about all the cancer in your family. Seems like you have a good attitude though.

I must be the only person in America who actually likes their health insurance (Aetna PPO). I went through both chemo and radiation for my cancer and all my treatments and all my diagnostic tests were covered 100%. The only thing I had to pay was the co-pay for the doctors' visits. So, I went through tons of diagnostic testing and six weeks of chemo-radiation and paid a grand total of about $600 out of pocket!

I have found a slightly different irony though: On the one hand, there is sometimes (not always, but sometimes) such bullying around screening tests. It seems that there is never an honest discussion of risks vs. benefits. Just: You need to get your mammogram/colonoscopy/bone density scan/pap smear or in your case your annual lung nodule scan and our office will schedule it for you.  But if you happen to have a rare disease (which is not cancer), you sometimes have to beg and beg doctors to take you and your symptoms seriously. Overkill or not-so-benign negligence.