There are a number of issues that leaped out at me about the hospital story you’re about to read. Let’s see how many of them you observe, too – and how many could have been prevented. This story is told by Ann, an Australian heart patient whose cardiac journey began in 2007 when she was 51 years old. But over the years since then, she has continued to suffer debilitating cardiac symptoms almost every day.
Her symptoms include not just chest pain, but pain throughout her upper back, jaw, shoulder, neck or arm, occasionally with severe shortness of breath. Despite taking a fistful of daily heart meds and wearing a nitro patch to help manage pain, Ann is rarely able to sleep through an entire night without being awoken by these symptoms. And here’s why . . .
Ann (not her real name, as she has requested) was finally diagnosed four years ago with two under-recognized forms of coronary artery disease that are most commonly found in female patients. But until her correct diagnoses were confirmed, many cardiologists and Emergency physicians Ann met over the years had told her repeatedly that her symptoms “cannot possibly be heart-related, because your coronary arteries are clear.”
After surviving a serious heart attack known as a STEMI (ST Elevation Myocardial Infarction) in 2007, Ann was also subsequently diagnosed with these two cardiac conditions:
1. Inoperable Coronary Microvascular Disease (MVD): also called small vessel disease (i.e. not caused by a big obstruction in a big coronary artery, but likely due to a dysfunction of the lining – endothelium – of the artery walls). I too share this diagnosis with Ann, and as I’ve written here, here and here, Mayo Clinic cardiologists sometimes call MVD a “trash basket diagnosis”. That’s not because the condition doesn’t exist, but because this disorder of the tiniest blood vessels feeding the heart muscle is so often missed entirely. ECG, cardiac enzyme blood tests, stress tests, and even (the gold standard) angiogram are all standard cardiac diagnostic tests that are unlikely to accurately identify MVD.* Often, a correct MVD diagnosis happens only after all other possible diagnoses are thrown out. It’s also why physicians kept dismissing Ann’s severe symptoms – because her standard cardiac tests appeared to be “normal”. And take it from me, once you’ve been definitively misdiagnosed based on your “normal” diagnostic results, further cardiac tests are rarely ordered. As Los Angeles cardiologist Dr. Noel Bairey Merz says, because microvascular disease “is not detected by standard diagnostic procedures, it goes unrecognized and untreated.”
2. Coronary Artery Spasm (CAS): also called Prinzmetal’s Variant Angina. This is caused by a sudden narrowing or constriction of coronary arteries. And just like those more commonly found big plaque obstructions in big arteries, a spasm can cause painful angina because it prevents oxygenated blood from reaching the heart muscle. Mayo Clinic cardiologists explain this non-obstructive condition like this: if a spasm episode lasts long enough, it can lead to severe chest pain (angina), dangerous heart rhythm disturbances (arrhythmia), or heart attack (myocardial infarction). Delay in diagnosing a vasospasm disorder is a serious and deadly concern.*
Such misdiagnoses are regrettably common in women – regardless of the cardiac event being misdiagnosed. A landmark study published in the New England Journal of Medicine, for example, reported that female heart patients under age 55 are seven times more likely to be misdiagnosed and sent home from Emergency compared to our male counterparts.(1)
On rare occasions, Ann’s symptoms become so severe that her prescription nitroglycerin spray cannot relieve them at home. She has had to make a number of Emergency Department visits over the years due to persistent bouts of terrifying chest pain, or for chest pain that was only partially relieved, uncontrolled by her nitro spray. During these trips to Emergency, she sometimes receives I.V. nitroglycerin infusions to effectively relieve these severe symptoms, but other times (depending on the hospital) Emergency staff refuse to provide the same nitro infusion – because “we don’t do that here.” Her last infusion was about two years ago.
To help prevent this inconsistent treatment from happening again, Ann now carries her cardiologist’s letter (written by a senior cardiologist with significant experience in treating microvascular and coronary spasm disorders). The letter requests that Emergency personnel start an I.V. nitroglycerin infusion to treat future prolonged bouts of Ann’s intractable angina.
Keep in mind while you’re reading Ann’s own words (below), that unlike many women presenting to Emergency who do not know what’s wrong, she had been correctly diagnosed with these two forms of non-obstructive heart disease four years ago.
Yet during a particularly fateful visit to the Emergency Department recently, she still encountered shockingly substandard care that led to needless suffering. See if you can peg the most preventable areas of concern during Ann’s time at the hospital, as she describes in this compelling narrative:
“Had a very interesting experience in the Emergency Department yesterday. I could hardly believe it. I went to hospital because I had had a particularly difficult night with chest pain, had been having an increase in frequency and intensity of chest pain, and had been advised to go to Emergency by the Australian Heart Foundation health information service.
“In Emergency, staff phoned a cardiologist to describe my condition. His response was relayed to me by the Emergency physician: ‘You can stay in the Emergency Department overnight but we will NOT give you a nitroglycerin infusion’ (in spite of that letter from my treating physician with instructions to do so). ‘We will not give you a holiday. You have normal coronary arteries and spasms are not dangerous! You should be reassured by this.’
“I immediately concluded that I would not stay. I told the Emergency doctor that I might as well leave, since they would be offering me no help.
“She asked me to stay for blood test results, but offered no pain relief of any kind during the time I was there. I figured I was better off on my own – because at least I would have my nitro spray.
“So I rang the call bell to arrange the discharge with the nurse. No one came.
“I disconnected the oximeter (which caused loud warning noises). No one came.
“I rang the bell again. No one came.
“I removed the blood pressure cuff. No one came.
“I rang the bell again. No one came.
“I removed the ECG leads (which caused loud warning noises). No one came.
“I gave myself some nitro spray. (Well, no one came…)
“I rang the bell again. No one came.
“I removed the I.V. which created a bit of a mess, but no one noticed – because no one came.
“I closed the curtains and got dressed. I rang the bell again. No one came.
“I collected up my things, looked around, began to walk out of the cubicle and a passing nurse smiled at me. I left and no one noticed.
“I have learned a lot from this particular experience. I will not go to that Emergency Department ever again.
“There really is a huge difference of opinion amongst cardiologists about the validity of the pain, appropriate treatment protocols and potential dangers associated with Coronary Microvascular Disease and Coronary Artery Spasm.
“I really am on my own.”
Ann’s story illustrates key examples of several preventable problems.
But is this about systemic problems, or a patient decision-making problem, or a problem with individual health care providers?
When I followed up with Ann, here’s her own list of the issues revealed in her story:
- No pain relief offered
- Disregard for my condition (despite letter from my cardiologist)
- Self-discharge went unnoticed
- My biggest mistake: assuming that the cardiologist would look after me with respect
(1) Pope JH, Aufderheide TP, Ruthazer R, et al. Missed diagnoses of acute cardiac ischemia in the emergency department. N Engl J Med. 2000;342:1163-1170.
♥ Need a translator for some of these cardiology terms? Visit my Heart Sisters patient-friendly, no-jargon glossary.
NOTE FROM CAROLYN: I wrote more about non-obstructive heart disease in my new book, “A Woman’s Guide to Living with Heart Disease”(Johns Hopkins University, November 2017). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) atAmazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
* Learn more about diagnosing non-obstructive coronary artery disease
Q: Are patients like Ann really on their own?
My love-hate relationship with my little black box – my own experience with an MVD diagnosis
A cardiologist’s advice on how to use this “wonder drug” – all about nitroglycerin