November 11th, 2010
Heart Failure: A Scary Name That Doesn’t Make Sense
Mary Knudson, Health Journalist
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
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.
7 Responses to “Heart Failure: A Scary Name That Doesn’t Make Sense”
NEJM Journal Watch — Recent Cardiology Articles- Persistent Symptoms After Valve Replacement for Severe Aortic Stenosis
- Is Diltiazem Safe in Patients with AF Taking Apixaban or Rivaroxaban?
- Does Lowering High Childhood Lipid Levels Prevent Adverse Cardiovascular Events in Adulthood?
- Self-Expanding Supraannular Valve vs. Balloon-Expandable Valve in TAVR for Small Aortic Annulus
- A New TAVR Prosthesis for Aortic Regurgitation Shows Promise
Perhaps cardiac congestion would be a better term. The congestion starts at the ankles, then gradually moves up to the trunk. The abdomen and chest fill with fluid. The heart dilates and fluid percolates into the alveolar space. The unfortunate patient has a continuous feeling of suffocation. They feel best sitting straight up. Eventually they become hypoxic and die. We mask this scenario using intubation and IV sedation in the CCU, so you don’t see it much anymore. However I must state Mother and Grandfather died in the way I described. It is a horrible death. Renal failure is much more of a humane way to die: uremic coma and then death. You didn’t need a vet to kill your dog, he would have died in peace without assistance and have felt no pain.
Competing interests pertaining specifically to this post, comment, or both:
None.
I am so sorry about your mother and grandfather and I can see how you have experienced the worst that true heart failure can bring. I wonder if they had lived today and had available the current medications such as ACE inhibitors and beta blockers if they would still have had the terrible progression to that type of suffering and death. I am so so sorry. I understand that some people still do die of heart failure despite all that medicine has to offer today. But often people get the diagnosis who don’t continue into this terrible state of drowning. These people who can get treatment and go on with their lives don’t need the label at work and at home of having heart failure. And those are really scary words for the patient to hear.
Cardiac congestion is an interesting term. I hadn’t thought of fluid buildup in the ankles as congestion, but it is, isn’t it. Congestion to me as a lay person means chest congestion. But the congestion is certainly also in the abdomen.
I didn’t know that my dog could have died on his own in no pain. I wonder why the vet didn’t explain that to me. Thanks for telling me. And thanks for taking time to read my blog post and share your thoughts about this.
Mary
Mary,
You are so right about the moniker, “heart failure.” It’s awful. I almost never use it with patients. I say, “you have a mildly, moderately or severely weak heart.” But I am not always the first doctor to see them, and so patients have often already heard the woeful words, “heart failure.” With strained faces, patients often ask me, “Doctor, do I really have HEART FAILURE?”
So yes, it would be good to have some new heart failure nomenclature. But as you correctly point out, heart failure is complex. And it will not be easy to break Doctors of old habits.
You mention kidney failure (sorry about your four-legged buddy), and to me, the nephrologists’ new terminology could work for heart failure. Kidney failure used to be called CRI (chronic renal insufficiency), but now they call it CKD (Chronic Kidney disease) Stage 1-5. Something like this could work for heart failure as well, However, since the heart is far more complex than the kidneys, we would have to incorporate systolic failure from diastolic failure, for instance. How about CHD “Chronic heart disease” stage 1-5?
Knowing cardiologists, though, they would add want to add many more layers of complexity. For example, they might say CHD stage IIa, non-ischemic, systolic, w/LBBB, etc, etc.
Great piece. Disseminating quality, unbiased, artfully-penned health information helps people. And, I firmly believe helping others is good for the heart.
John
PS: Also, say hello to Dr Katz if you speak with him again. I was a medical student at UCONN in the early 1990s and I can remember Dr Katz as a spirited instructor. I also remember willing myself through his red Cardiac Physiology text. I read it twice. That was it; I was hooked. Although, the Indiana boys taught me how to be an electrophysiologist, Dr Katz first showed me how cool the human heart is. And for that I am grateful.
John,
Thank you so much for your interesting comments. I’m glad you don’t tell most of your patients that they have heart failure. You’ve seen in their faces what I’m talking about.
I suspect that renaming heart failure would be a challenge that could bring dozens of possible names into nomination and debate and, as you point out, cardiologists would want to use lots of adjectives and qualify and separate types and so forth. But a committee could be formed to ask for names from the cardiology community and then the committee could narrow down the ideas and present perhaps three or four for a vote. Maybe every condition that is now under the umbrella of heart failure doesn’t belong there. I can see a doctor telling a patient with an enlarged left ventricle who has no symptoms of congestion or shortness of breath or fatigue that you very likely will get heart failure (or the replacement name) if you don’t start these medications now and take them daily. But if you do take the medications there is a strong possibility that you will not develop heart failure (or the replacement name). This would be a much better approach then to tell the patient that he is in stage one heart failure. He is not in heart failure. And an enlarged left ventricle can respond to medication and reshape and become normal again.
Thank you so much for your compliments on my blog post. I very much appreciate that.
Perhaps Dr. Katz will see your message but I can also let him know that a former student remembers learning from him how cool the human heart is and getting hooked on cardiology through his red Cardiac Physiology book of adventure.
Mary
With his permission, I am passing along Arnold Katz’s response to John Mandrola:
“Thank you for passing this along. Please tell John how pleased I am to have heard
from him and that I wish him well. You can also tell him that the “red Cardiac
Physiology text” just came out in its 5th edition (see attached).
I am “retired” in the Dartmouth community, where I teach in many courses; however,
as this rural setting provides only a very slow internet access I cannot handle
blogs (downloading takes lots of time, uploading even more).
Thanks again to you and John for the contact.”
Arnold Katz
P.S. The brand new fifth edition of Physiology of the Heart is still red and, I’m sure, still magical, and I’ll bet Dr. Katz will never retire. I hope he gets lots of congratulations on his new book. His e-mail is Arnold.M.Katz@Dartmouth.EDU.
Mary
Mary –
The cynic in me must also point out that our complex and totally irrational medical diagnosis and procedural coding schemes may also have contributed to your confusion. That’s because anything labeled “heart failure” generally pays doctors and hospitals better (higher acuity = more money). So if a company makes a gizmo that treats weak hearts and studies it on people with severe “heart failure”, the FDA and Medicare requires people to have “heart failure” as part of their indication for use of (and subsequent payment for) the gizmo.
But let’s say a company wants to expand their market to people with milder forms of the disease. it is far easier to stick with the same name and reference old data in the study design “background” than creating a whole new untested disease entity. Adding a new disease name forces Medicare to question if more studies are needed on the NEW disease first before justifing payment for the same gizmo.
With research costs so high, no company (or doctor) wants to go there, so the old name “sticks.”
Just sayin’.
Groan. I hear you. I would hope that common sense could prevail (new name, formerly known as heart failure), though this may be unlikely in dealing with the federal government. I suspect there are also other financial/political reasons for lumping so much under “heart failure” including organizations and individual researchers seeking grant money for this big huge terrible predator that is stalking the growing older generation.
But I think we can’t lose sight of the individual new patient who a doctor will look in the eye and say “You have (adjectives galore) heart failure.” Patients have to matter. Each patient has to matter. Otherwise there is no point in people becoming physicians.