Mary-Ann, a reader from the north, provides today’s post. Her story illustrates how easily medical care can veer off the rails while it is simultaneously railroading patients. It is a cautionary tale with wisdom that can help most patients.
In this post I’ll just present Mary-Ann’s perspective and solicit responses. Down the line I’ll provide some perspective on the processes, the problems and the solutions.
It started innocently enough. I showed up for a regular visit with my cardiac provider, a mid-level professional. She noted I was flushed and had a high pulse — about 100.
Starbucks, I explained, and I flush easily — always have. She looked skeptical.
That is how I went from a half-caf Americano to a 48-hour holter monitor.
I went back for results — the usual ectopic beats but nothing scary or new. But again, she noted I had a fast heart rate and I was flushed.
And once again I explained: Starbucks — it is right down the street and okay, I might have a problem.
That is the short — but highly accurate — version of how I wound up getting a stress echo.
I showed up for the results of the echo and that is where the runaway train started down the tracks.
“…possible inferoapical wall hypokinesis with lack of augmentation of systolic function, which are abnormal findings and may be indicative of ischemia due to underlying coronary artery disease. EF was 56% at rest and 40-50% at stress.”
Wait — what?!
I was marched down the hall and scheduled for a cardiac angiography — and told not to run any marathons in the intervening two days.
Marathon?! I was terrified I was going to drop dead at any moment. I contemplated just sitting the waiting room for 48 hours — just to be safe.
Then I started reading the professional literature and things were not adding up. An EF at stress of 40 – 50% is not good — in fact, it can be heading into heart failure land.
But I was active and fine — it did not make any sense.
I called the office; my provider was not available. I explained that I was worried there was a mistake. Oh no, I was assured, they are very careful to not make mistakes.
I wrote my will. I cried a lot.
And when the person called to remind me of the procedure (like I could forget!?) I once again explained that I was worried there had been a mistake, and once again — reassurance. No mistake.
Nevertheless, she (aka me) persisted!
I sat on the hospital bed in nothing but a gown and handed the nurse my two-page letter; it started like this:
“I am reminded that what is normal and ordinary for a professional is never that for a patient. I am terrified.
First, I want to be really sure that there is not any chance of a mix-up in the stress echo test results. This is not simple denial or wishful thinking…”
And that nurse paid attention, which is how I wound up not having a cardiac angiography.
The cardiologist scheduled to do the procedure — we shall call him Doc #2 — wrote:
“She has some concerns regarding the results of the stress echo study … I reviewed the most recent stress echo and it appears to me that the results for the resting versus the stress echo ejection fractions have been transposed…”
Translation: A Typo.
I was elated! Jubilant! We went to Starbucks to celebrate.
The giddy joy quickly turned to something along the lines of WTH just happened here? I read the original echo report written by Doc #1 — that lit the tinder. There were two different values for EF at stress documented in the report, and another sentence that was repeated.
The professorial side of me was deeply affronted — in a subsequent meeting with hospital administrators I confess to saying that someone who is making hundreds of thousands of dollars a year doesn’t get to write such a sloppy ass report — and about someone’s heart, no less!
But the best part of that meeting was learning that Doc #1 denied there was a typo — he stood by his findings.
And Doc #2 stood by his findings as well. And Doc #3 got involved somewhere along the way and he agreed with Doc #2. And the mid-level Provider also agreed with Doc #2.
The majority rule seems like an odd way to make health care decisions — wouldn’t you think all those smart people could talk among themselves and agree?
That first meeting with the hospital folks included all manner of solicitous apologies and an attitude of collaboration. Of course, they said, we can send the echo to an outside cardiologist — at our expense — and get an answer.
And then I made the unthinkable mistake — and I blame the Skeptical Cardiologist for this — of asking informed questions.
“Are the cardiologists involved in reading my echo Level III echo specialists?”
“I understand that there can be variance in estimated EF between cardiologists — what level of variance is considered acceptable?”
The hospital team responded to my questions by calling a meeting — and the tone had changed considerably (Thanks a lot, Corporate Legal).
The offer to pay for an outside opinion was off the table — after all, they said, you would not have a patient-provider relationship with the cardiologist reading the echo. Ahem, I noted — I have zero relationship with the first cardiologist who read the echo and would not know him if I bumped into him at Starbucks. And you all did offer to pay for that outside opinion…
Oh never mind those minor details. No outside opinion on their dime. They would do a Lexiscan at their expense as a tie breaker. Final Offer.
Tiebreaker — really?! Is this a soccer game?
And seriously — should I have to have an invasive test to settle THEIR disagreement?! [Note: If it involves needles, it is invasive.]
Because there were not enough cardiologists involved already, I saw yet another one — from a different practice. He offered that the EF at stress looked more like 55%, placing his bet smack in the middle, and recommending a CT Angiography Coronary Arteries with Contrast as the tiebreaker.
Tiebreaker. That word implies both sides are equivalent or equal. However, my heart is not actually a game and the two teams cannot both be right — there is no equivalency in play here. What we are really trying to do involves accuracy — not breaking a tie score.
But I digress.
It doesn’t seem like you should have to make a chart to keep track of what cardiologists say about the same echo but in this case, it seemed necessary.
And in the meantime, yet another cardiologist weighed in that the quality of the echo was poor — and no wonder they could not agree.
And so, for the past four months I have tried to navigate all this, and to understand what this actually means about cardiology and medicine and so many things. My confidence and my mind have been blown. Resources – and time – have been wasted.
Ectopic heartbeats are typically benign in a structurally normal heart — I thought I was safe. But I have not felt safe since that day when I learned that Doc #1 and Docs #2, 3, and so on had decided to have a stand-off at the OK Corral that is my heart.
Except, I do not know if it is okay. And that is the problem.
Unfortunately, Mary-Anne’s tale is not uncommon. It touches on many of the areas that patient’s should be aware of including
-Undergoing diagnostic imaging testing when you are free of symptoms
-Inadequate quality control in diagnostic imaging and how that leads to false positive results
-Variance in imaging performance and interpretation-how the same test can be read as normal by one doctor and markedly abnormal by another.
-The tendency of some cardiologists to recommend invasive testing when it is inappropriate and likely to cause more harm than good
-The importance of second opinions, especially if invasive testing is recommended
-The importance of patient’s doing their own research and asking good questions based on that research.