CardioExchange Archive

Well-known science journalist Mary Knudson is the author of HeartSense, a blog about heart failure, from which the following post is taken. In this post, she questions the aptness of the designation “heart failure.”

For the last week, I have been mulling over the term heart failure, questioning how the collective conditions that bear this label 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 heart failure becomes 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.

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

Somehow, so much is encompassed under the same heart failure umbrella that discussing the syndrome is confusing for physicians and patients.  “Skilled clinicians have difficulty with this, and most fumble around,” James B. Young,  Professor of Medicine and Executive Dean, Cleveland Clinic Lerner College of Medicine, told me in an e-mail. So 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 hanging over his skeleton, but he had a great appetite and put on weight, filling out very normally, enjoying his walks, and loving to play catch-me-if-you-can with a nylon bone or an old house shoe every time one of us 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 to protrude.  On a walk, he would only go one block before turning to go 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 his blood test results.  His blood urea nitrogen (BUN) was 237, the highest my vet had ever seen.  A normal BUN level in a dog is 6 to 31.  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 had to either go on dialysis or get a kidney transplant in order to live.  Teddy was miserable, had lost weight quickly, and had grown a tumor which I would have wanted removed were it not for the kidney failure.  The vet said that the anesthesia itself could be so toxic to 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 very differently.  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 when 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 to cause symptoms.  But if the heart had failed, as the kidneys have in kidney failure, the patient would need a machine to circulate blood throughout his system, or an implanted device that takes over at least some heart function, or a heart transplant to live.

Heart failure is an appropriate term for the condition now described as end-stage heart failure, in which patients have, at most, months to live unless mechanical aid (e.g., a ventricular assist device) takes over part or all heart function or the patient gets a heart transplant.  But I submit that this is the only true heart failure. Just drop the first word, because end-stage heart failure is redundant.

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

Why does it matter what conditions are called heart failure?  Why does it matter how many people hear a diagnosis of 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 effect the words heart failure can have on a patient, 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 to be hospitalized where doctors had never seen this viral illness, did not recognize it, and decided to operate, 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, blond, 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.  Who let this kid in the room?  There’s a reason that 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 because, like the words critical list, the term heart failure is very frightening, and much of the time, unnecessarily so.  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 frightening diagnosis, and I appreciate that this is emotionally hard for 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 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  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 for this condition that now wears one inappropriate label disturbing and confusing to patients and their close circles? How much easier and more exact for your patient to hear, “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 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.