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Heart Failure: a scary name that doesn't make sense

Heart Failure: a scary name that doesn't make sense

Picture of Mary Knudson

For the last week I have been mulling over the name heart failure, questioning why the collective conditions that bear its name ever got such a name, and looking into the very murky area of heart failure death statistics.  Many, many of us who were shocked to get the frightening diagnosis "heart failure" do not have hearts that have failed.  We got treated, some more quickly than others, and went right on with our lives.  Others are not so lucky and die of heart failure, sometimes suddenly and sometimes after years.  Trying to discuss what heart failure is gets very difficult because it is not a disease, it is a syndrome brought on by many different underlying causes including coronary artery disease, disease of the heart muscle, high blood pressure, valve malfunction, poor artery connection, alcoholism or drug abuse, and certain chemotherapies, to name just a few.  And heart failure affects the heart in different ways. 

The term heart failure covers conditions ranging from no symptoms to severe shortness of breath from fluid collecting in the lungs, swelling of the abdomen, ankles and feet, and fatigue even at rest -- see American College of Cardiology/American Heart Association Stages of Heart Failure and New York Heart Association Classification of the stages of heart failure.

Somehow the field of medicine has allowed so much under the same umbrella of heart failure that discussing heart failure becomes confusing for physicians and patients.  "Skilled clinicians have difficulty with this and most fumble around," James B. Young,  Professor of Medicine & Executive Dean, Cleveland Clinic Lerner College of Medicine, told me in an e-mail. So trying to write about what medicine calls heart failure, what's wrong with the name, and what, if anything, to do about it is challenging. 

Then yesterday something happened that clarified the picture for me.  I knew when I got a pit bull from a rescue organization a year ago that he had a kidney problem and I agreed to take him because he had a terrible earlier life that included months spent in a cage that nearly drove him insane.  I wanted to give him a loving home for whatever time he had, a year or two.  He arrived with skin hung over his skeleton, but he had a great appetite and put on weight, filling out very normally, enjoyed his walks and loved to play catch-me-if-you-can with a nylon bone or an old house shoe in his mouth every time one of us who had been out during the day returned home.

Then in the last week things changed.  He started throwing up and for the last four days he could not keep anything down.  He was noticeably losing weight.  His very thick neck thinned in a matter of days and his spinal column began protruding.  He would only go one block on a walk before turning to come home.  He quit playing catch-me.  He lay constantly on his bed or, at night, my bed.  Monday we took him to the vet and yesterday morning we got results of his blood tests.  His blood urea nitrogen (BUN) was 237, the highest my vet said he had ever seen.  A normal BUN level in a dog is 6 to 31, the vet said.  A high BUN level indicates that toxins are not being removed by the kidneys.  My dog was in kidney failure, my vet told me.  That was the first time I was told he was in kidney failure.  And those words made a lot of sense.  Teddy was not in kidney failure for the last year, only for the last few days.  His kidneys indeed had failed.  If he were a person, he would have to either go on dialysis or get a kidney transplant in order to live.  Teddy was miserable, had noticeably lost weight quickly, and also had grown a tumor which I would have wanted the vet to operate on, were it not for the kidney failure.  The dog doctor said that the anesthesia itself could be so toxic on the kidneys that it might kill Teddy.  And so at noon, with tears and heavy heart, to end his suffering, we had him put to sleep. 

Yesterday afternoon in a house far too quiet, I tried to return to writing.  And then I got to thinking.  Kidney failure.  Heart failure.  The two terms sound alike but are used by doctors for very different health problems.  But why?  In kidney failure, the kidneys don't work anymore.  It's so obvious you hardly need a blood test to prove it.  As with heart failure, many different things may have caused it, and the kidney failure may have come on gradually or acutely, but kidney failure is kidney failure.  It means what it says.  Contrast that with heart failure, where most of the time the diagnosis is made, the heart is still working.  It has not failed, although something about the heart is not normal and may have begun causing symptoms.  But if the heart had failed, an analogy to kidney failure would mean that a person with heart failure would have to regularly be on a machine that circulates blood throughout his system or get an implanted device that takes over at least partial function of the heart or get a heart transplant in order to live.

Heart failure is an appropriate name for patients who are now said to be in "end-stage heart failure" in which they have only months or less to live unless they get mechanical aid to take over part or all of their heart function as in a ventricular assist device (VAD) or get a heart transplant.  But I submit that this is the only true heart failure.  Just drop the first two words, because "end stage heart failure" is redundant.

Heart failure is not an appropriate diagnosis for people who have no symptoms or who have symptoms that can be improved or even disappear under treatment.

Why does it matter what conditions are called heart failure?  Why does it matter how many people hear their diagnosis is heart failure?  Shouldn't I just leave the naming of medical conditions and diseases to doctors and mind my own business?  What's in a name?  

Here's why it matters.  As I consider the words heart failure, and the effect those two words can have on the person diagnosed with it, I am reminded of an event that happened to me while I was in college.

Occasionally someone can say something to you that is so scary it seems it might scare you to death.  Near final exam time I quite suddenly came down with a paralyzing illness, transverse myelitis, and had the misfortune of being hospitalized where doctors had never seen a case of transverse myelitis, did not recognize it, and decided to operate on this viral illness, looking for an obstruction they did not find. While inside me for "a look-see", the general surgeon cut into inflamed tissue to take out my healthy appendix.  Already very sick and rapidly becoming paralyzed, I nearly hemorrhaged to death from the surgery and was placed on the hospital's "critical list" of patients who may die. 

While I knew how terrible I felt, neither doctors nor family had let me know how very sick I was.  The sight of my 8-year-old blonde cherub-faced nephew cheered me. This was his first visit and I could tell he was excited about something and wanted to share it with me.  How sweet.  He came right up to my bedside.  

"Hey, Aunt Mary," he gushed, "Do you know you're on the CRITICAL LIST?"   

AAAAAAhhhhhh!  Terror hijacked my entire body.  

No, Gary, nobody had told me I'm on the CRITICAL LIST.  Who let this kid in the room?  There's a reason why children shouldn't be allowed in hospitals.  I couldn't speak.  A numbness began in my feet and crept up my legs.  

This story, still so vividly recalled, comes to mind as I write about the diagnosis of heart failure because, like those other two words critical list the term heart failure is very frightening to hear.  And much of the time heart failure is an unnecessarily scary diagnosis.  Every day thousands of people are frightened to learn they have heart failure.  I was. Never having had any known heart problem, I sat in shock when a cardiologist told me in 2003 that I had HEART FAILURE.  When a doctor tells you that, it's like being told you have end-stage cancer. You know nothing about heart failure, probably have never heard of it, and it sounds quite fatal.  I went home and made out a will, then spent several months educating myself about heart failure and going from doctor to doctor, searching for the right treatment, afraid that I could drop dead at any moment.  

It's one thing for an 8-year-old kid to scare a sick patient, quite another for a grown-up doctor to do it.   I realize that there are many times when a doctor has to give a diagnosis to a patient that is frightening and I appreciate that this is emotionally hard on many caring doctors.  But, doctors, do you ever wince when you tell a patient she has heart failure when you believe that proper medications may make a big change in her symptoms?  I ask doctors to be more aware that a diagnosis is a two-way act of communication:  It is words the physician says and it is words the patient hears. One is just as important as the other.  Your diagnosis is not complete, doctors, until the patient has heard it. 

I was not able to find out who originated the term heart failure as a diagnosis.  Renowned cardiologist historian Arnold M. Katz , who is the most likely source, told me "It will be hard to find out who (first) used the term heart failure as most of the early texts were written in Latin, a language I do not speak."  But the name got into the medical literature long ago before modern therapies were available.   

I wish the medical community would find a new term -- how about Heart Flux or Heart Fatigue or Heart Stress Syndrome -- or multiple terms for diagnosing this condition that now wears one inappropriate label disturbing and confusing for the person diagnosed and those in the labeled person's close circle at home and at work. How much easier and more exact to tell your patient and for him to hear the words, "Your heart is in a state of flux/or fatigue/or stress/ and I have some medications to give you that have a good chance of helping it a lot" instead of "You have heart failure."  

Until then, I hope that, when pronouncing the scary words "heart failure" to a new patient, doctors will take the time to explain that, much of the time, it's not what it sounds like.  

[My next post will be about heart failure death statistics.  What do they mean?]


Picture of Peter Lipson

Trying to discuss what heart failure is gets very difficult because it is not a disease, it is a syndrome...

A critical point, often missed.


I'd argue though that the "scare factor" of "heart failure" can be important.  Though it is a protean syndrome, people can be at very high risk of sudden death, even with no symptoms.  It's a fascinating set of diseases (less so if you suffer from them).

Picture of Mary Knudson

The only way to prevent sudden death is to get an implantable cardioverter defibrillator (ICD)and a person who has no symptoms such as fainting and has no low ejection fraction, the measure that shows how much blood the heart is pumping out, would not be eligible to get an ICD. People whose other health problems or heart structure or symptoms put them at risk of developing heart failure should certainly be told that.  And they should be encouraged to get on medicines that will help prevent them from developing heart failure.  But they should not be told they have heart failure because their heart has not failed.  A medical term should mean something and there should be consistency.  Kidney failure means the kidneys have failed.  Heart failure should mean that the heart has failed.

Picture of Peter Lipson

Well, beta blockers also prevent sudden death...

I agree that the terminology is imprecise.

Picture of Mary Knudson

Beta blockers certainly can help and most people at risk for heart failure should be on them.  But if beta blockers actually prevent sudden death, why would anyone ever get an implantable cardioverter defibrillator (ICD)?  It's the only sure thing to prevent sudden death and because it is life saving it is overused.  It's so hard for physicians to pinpoint those people who actually will benefit from an ICD.  And, as you know, they have drawbacks.  They can misfire which is painful and upsetting and about a third of people who get them develop depression.  Yet doctors and patients turn to this device to avoid sudden death.

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The French call it "insuffisance cardiaque", which means cardiac insufficiency. A lot better than the "failure" misnomer. An important doctor must have first used it, and then everybody else followed, as usual. Fortunately for me, my reaction to this term was total disbelief: I am alive, I thought, my blood pressure and EKGs have always been good, what is he talking about? When the cardiologist came to my hospital room, he clearly explained that my heart was not failing me, that it was simply failing to perform its task at the right level. At last, I had a real diagnostic. I had first been diagnosed as having bronchitis, then pneumonia, then pulmonary embolism, and finally, heart failure. The medical profession had wasted almost three months with all these false "diagnosis", but I am finally on the right medicine and doing well. Thank you for sharing your amazing story, Mary, and thank you for spreading hope.

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I am new to CHF and Mary Knudson, and this site. I noticed that Mary's writings seem all to be in 2010. Is she still with us? Her information, optimism, and personal experience with CHF is quite helpful.

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I was, subject to blood and other tests, very recently diagnosed with "heart failure". I commented to my GP (general practitioner in the UK) in an email that I found the term rather scarey to say the least. He gave me the link for this article.
I do think, that there should be another term for this condition, or the physician who gives you this diagnoses, should then give you a verbal definition.


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