{"id":4506,"date":"2010-11-11T13:11:15","date_gmt":"2010-11-11T18:11:15","guid":{"rendered":"http:\/\/blogs.nejm.org\/cardioexchange\/?p=4506"},"modified":"2011-07-19T17:45:23","modified_gmt":"2011-07-19T21:45:23","slug":"heart-failure-a-scary-name-that-doesnt-make-sense","status":"publish","type":"post","link":"https:\/\/blogs.nejm.org\/cardioexchange\/2010\/11\/11\/heart-failure-a-scary-name-that-doesnt-make-sense\/","title":{"rendered":"Heart Failure: A Scary Name That Doesn’t Make Sense"},"content":{"rendered":"

Well-known science journalist Mary Knudson is the author of HeartSense<\/a>, a blog about heart failure, from which the following post is taken. In this post, she questions the aptness of the designation \u201cheart failure.\u201d<\/em><\/p>\n

For the last week, I have been mulling over the\u00a0term\u00a0heart failure<\/em>, questioning\u00a0how the collective conditions that bear\u00a0this\u00a0label ever got such a name, and looking into the very murky area of heart failure death statistics.\u00a0 Many, many of us who were shocked to get the frightening diagnosis heart failure<\/em> do not have hearts that have failed.\u00a0 We got treated, some more quickly than others, and went right on with our lives.\u00a0 Others are not so lucky and die of heart failure, sometimes suddenly and sometimes after years.\u00a0 Trying to discuss\u00a0heart 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.\u00a0 And heart failure affects the heart in different ways.<\/p>\n

Heart failure<\/em> 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<\/a>.<\/p>\n

Somehow, so much is encompassed under the same heart failure<\/em> umbrella\u00a0that discussing the syndrome is confusing for physicians and patients.\u00a0 \u201cSkilled clinicians have difficulty with this, and most fumble around,\u201d James B. Young,\u00a0 Professor of Medicine\u00a0and Executive Dean, Cleveland Clinic Lerner College of Medicine, told me in an e-mail. So to write about what medicine calls heart failure<\/em>, what\u2019s wrong with the name, and what, if anything, to do about it, is challenging.<\/p>\n

Then, yesterday, something happened that clarified the picture for me.\u00a0 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.\u00a0 I wanted to give him a loving home for whatever time he had, a year or two.\u00a0 He arrived with skin\u00a0hanging 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.<\/p>\n

Then in the last week, things changed.\u00a0 He started throwing up, and for the last four days he could not keep anything down.\u00a0 He was noticeably losing weight.\u00a0 His very thick neck thinned in a matter of days, and his spinal column began to protrude.\u00a0 On a walk, he would only go one block before turning to\u00a0go home.\u00a0 He quit playing catch-me.\u00a0 He lay constantly on his bed, or at night, my bed.\u00a0 Monday we took him to the vet, and yesterday morning we got his blood test results.\u00a0 His blood urea nitrogen (BUN) was 237, the highest my vet had ever seen.\u00a0 A normal BUN level in a dog is 6 to 31.\u00a0 A high BUN level indicates that toxins are not being removed by the kidneys.\u00a0 My dog was in kidney failure,<\/em> my vet told me.\u00a0 That was the first time I was told he was in kidney failure.\u00a0 And those words made a lot of sense.\u00a0 Teddy was not in kidney failure for the last year, only for the last few days.\u00a0 His kidneys indeed had failed.\u00a0 If he were a person, he would have had to either go on dialysis or get a kidney transplant in order to live.\u00a0 Teddy was miserable, had\u00a0lost weight quickly, and\u00a0had grown a tumor which I would have wanted removed were it not for the kidney failure.\u00a0 The vet said that the anesthesia itself could be so toxic\u00a0to the kidneys that it might kill Teddy.\u00a0 And so at noon, with tears and heavy heart, to end his suffering, we had him put to sleep.<\/p>\n

Yesterday afternoon, in a house far too quiet, I tried to return to writing.\u00a0 And then I got to thinking.\u00a0 Kidney failure.\u00a0 Heart failure.<\/em> The two terms sound alike but are used by doctors\u00a0very differently.\u00a0 But why?\u00a0 In kidney failure, the kidneys don\u2019t work anymore.\u00a0 It\u2019s so obvious you hardly need a blood test to prove it.\u00a0 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.\u00a0 It means what it says.\u00a0 Contrast that with heart failure, where most of the time when the diagnosis is made, the heart is still working.\u00a0 It has not failed<\/em>, although something about the heart is not normal and may have begun\u00a0to cause\u00a0symptoms.\u00a0 But if the heart had failed,\u00a0as the kidneys have in\u00a0kidney failure, the patient would\u00a0need\u00a0a machine\u00a0to circulate blood throughout his system, or\u00a0an implanted device that takes over at least\u00a0some heart\u00a0function, or\u00a0a heart transplant to live.<\/p>\n

Heart failure<\/em> is an appropriate\u00a0term for the condition\u00a0now described as\u00a0end-stage heart failure<\/em>, in which\u00a0patients have,\u00a0at most,\u00a0months to live unless mechanical aid\u00a0(e.g., a ventricular assist device) takes over part or all\u00a0heart function\u00a0or the patient gets a heart transplant.\u00a0 But I submit that this is the only true\u00a0heart failure. <\/em>Just drop the first word, because end-stage heart failure<\/em> is redundant.<\/p>\n

Heart failure is not an appropriate diagnosis for people who have no symptoms or\u00a0whose symptoms can be improved or even disappear\u00a0with treatment.<\/p>\n

Why does it matter what conditions are called heart failure<\/em>?\u00a0 Why does it matter how many people hear\u00a0a diagnosis\u00a0of heart failure?\u00a0 Shouldn\u2019t I just leave the naming of medical conditions and diseases to doctors and mind my own business?\u00a0 What\u2019s in a name?\u00a0\u00a0Here\u2019s why it matters:\u00a0 As I consider the effect the words\u00a0heart failure<\/em> can have on\u00a0a patient, I am reminded of an event that happened to me while I was in college.<\/p>\n

Occasionally someone can say something to you that is so scary it seems it might scare you to death.\u00a0 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 \u201ca look-see\u201d, the general surgeon cut into inflamed tissue to take out my healthy appendix.\u00a0 Already very sick and rapidly becoming paralyzed, I nearly hemorrhaged to death from the surgery and was placed on the hospital\u2019s critical list of patients who may die.<\/p>\n

While I knew how terrible I felt, neither doctors nor family had let me know how very sick I was.\u00a0 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.\u00a0 How sweet.\u00a0 He came right up to my bedside.<\/p>\n

\u201cHey, Aunt Mary,\u201d he gushed, \u201cDo you know you\u2019re on the CRITICAL LIST?\u201d<\/p>\n

AAAAAAhhhhhh!\u00a0 Terror hijacked my entire body.<\/p>\n

No, Gary, nobody had told me.\u00a0 Who let this kid in the room?\u00a0 There\u2019s a reason\u00a0that children shouldn\u2019t be allowed in hospitals.\u00a0 I couldn\u2019t speak.\u00a0 A numbness began in my feet and crept up my legs.<\/p>\n

This story, still so vividly recalled, comes to mind as I write because, like the words\u00a0critical list,<\/em> the term\u00a0heart failure<\/em> is very frightening, and much of the time, unnecessarily so.\u00a0 Every day, thousands of people are frightened to learn they have heart failure.\u00a0 I was.\u00a0\u00a0Never having had any known heart problem, I sat in shock when a cardiologist told me in 2003 that I had HEART FAILURE.\u00a0 When a doctor tells you that, it\u2019s 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.\u00a0 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.<\/p>\n

It\u2019s one thing for an 8-year-old kid to scare a sick patient, quite another for a grown-up doctor to do it. \u00a0 I realize that there are many times when a doctor has to give a frightening diagnosis, and I appreciate that this is emotionally hard\u00a0for many caring doctors.\u00a0 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?\u00a0 I ask doctors to be more aware that a diagnosis is a two-way communication:\u00a0 It is words the physician says, and it is words the patient hears. One is just as important as the other.\u00a0 Your diagnosis is not complete, doctors, until the patient has heard it.<\/p>\n

I was not able to find out who originated the term\u00a0heart failure <\/em>as a diagnosis.\u00a0 Renowned cardiologist-historian Arnold M. Katz\u00a0 told me, \u201cIt will be hard to find out who (first) used the term heart failure,<\/em> as most of the early texts were written in Latin, a language I do not speak.\u201d\u00a0 But the name got into the medical literature long ago before modern therapies were available.<\/p>\n

I wish the medical community would find a new term. How about heart flux<\/em> or heart fatigue<\/em> or heart stress syndrome<\/em> for\u00a0this condition that now wears one inappropriate label disturbing and confusing\u00a0to\u00a0patients\u00a0and their\u00a0close circles? How much easier and more exact for your patient to hear, \u201cYour 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,\u201d instead of \u201cYou have heart failure.\u201d<\/p>\n

Until then, I hope that when pronouncing the scary words heart failure<\/em> to a new patient, doctors will take the time to explain that, much of the time, it\u2019s not what it sounds like.<\/p>\n","protected":false},"excerpt":{"rendered":"

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 \u201cheart failure.\u201d For the last week, I have been mulling over the\u00a0term\u00a0heart failure, questioning\u00a0how the collective conditions that bear\u00a0this\u00a0label ever got such a […]<\/p>\n","protected":false},"author":394,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[14],"tags":[539,287],"class_list":["post-4506","post","type-post","status-publish","format-standard","hentry","category-heart-failure","tag-diagnosis","tag-heart-failure-2"],"_links":{"self":[{"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/posts\/4506","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/users\/394"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/comments?post=4506"}],"version-history":[{"count":0,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/posts\/4506\/revisions"}],"wp:attachment":[{"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/media?parent=4506"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/categories?post=4506"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/tags?post=4506"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}