Is it finally time to change the name ‘heart FAILURE’?

by Carolyn Thomas      @HeartSisters

When McMaster University cardiologist Dr. Harriette Van Spall asked her Twitter followers recently to offer topic suggestions for the upcoming Heart Failure Summit, I responded with a suggestion of my own:

“Please please please can we STOP calling this condition heart FAILURE?”    .

The reasons behind my plea are the same ones that I’ve been writing and speaking about for years. I’ve listed them most recently in my post called Would You Drive Your Car If Its Brakes Were ‘Failing’?

Dr. Van Spall replied to my suggestion right away:

Long-standing debate – I hear you! While I don’t anticipate that we will change the nomenclature, the theme of the meeting is intended to provide hope and tackle the root causes of heart failure (as much as discuss evidence-informed treatments).”

But that’s the problem with the name heart “failure”. By definition, it’s tough to “provide hope” while continuing to tell freshly-diagnosed heart patients that their hearts are “failing”.

There is nothing hopeful about that.

I often hear from my readers who have sat through that conversation with their cardiologist. Those who have heard this diagnosis firsthand almost always compare that frightening moment to a “death sentence”.

Here’s a fairly typical comment, for example, from one of my readers explaining her own moment:

“The doctor kept on talking but I couldn’t seem to understand another word after I heard ‘heart failure’. I honestly felt like I was going to pass out or vomit, or both.

“Failing? My heart is failing?!  I left his office and then very slowly I walked out to the parking lot, but I was too afraid to get into my car and drive home. How could I possibly live if my heart was failing?  I truly expected to drop dead at any moment.”

This is an important patient narrative. I’ve observed that many physicians still insist that they are somehow able to minimize the traumatizing effect of hearing the words heart failure by immediately reassuring the patient that the name doesn’t really mean that the heart is failing.

That’s quite simply a preposterous interpretation. Failure means failure. Full stop. If it doesn’t mean it, then stop saying it.

This of course begs the question: if you must use a name that requires an immediate disclaimer to reassure us that words don’t actually mean what we think they mean, isn’t it time to let go of that name?

It turns out that throughout the history of medicine, many other conditions have started off with a name which was later changed to something more appropriate.

Until 1982, HIV/Aids was known as GRID (short for Gay-Related Immune Deficiency, even though about half of the people identified with the syndrome were NOT gay).

When I was young, physicians called people who were developmentally or cognitively delayed mentally retarded (which itself had been a replacement descriptor for the previous century’s use of imbecile and moron).

Stroke was once known as apoplexy.

Tuberculosis used to be called consumption.

The most recent medical name change happened to a viral infection that first hit the headlines as Wuhan SARS or Wu Flu (named after the city in China where it was first documented last year). But the World Health Organization (WHO) discourages the use of geography in the naming of diseases (because of the significant stigma such names bring) so last month, WHO renamed the disease corona virus disease 2019 (COVID-19)

Words do matter, as the legendary Nobel prize-winning pioneer cardiologist Dr. Bernard Lown warns his colleagues whenever they use what he calls words that hurt.

Here’s how Dr. Lown described this cardiac condition:

Heart failure is not a disease. It’s just a description of clinical syndromes. A heart failure prognosis is no longer what it used to be; much of the damage that occurs to the heart may be reversible, and the symptoms controlled over decades.”

So the name heart failure does not accurately reflect the current definition of this condition: essentially, when your heart is not pumping blood as well as it should.

Cardiologist Dr. Lynne Warner Stevensona professor of medicine at Harvard University, wants to see the end of heart failure:

“We have to call it something else! The term ‘heart failure’ denotes a hopeless defeat that may limit our ability to encourage patients to live their lives. Words are hugely powerful.

“Patients do not want to think of themselves as having heart failure. It can make them delay getting care, and it makes them ignore the diagnosis.

“I worry about that a lot. Patients tend to hide that they have heart failure. We need to come up with a term that does not make patients ashamed.”

Instilling anxiety or shame is bad doctoring, threatening to intensify the severe emotional distress that can so often accompany this serious diagnosis.

In fact, the European Society of Cardiology warns that new-onset depression occurs in over 40 per cent of patients within the first year after a heart failure diagnosis, and is associated with a FIVE-FOLD HIGHER MORTALITY RISK, independent of the severity of heart failure.

And no wonder these people are depressed! They have just been told their hearts are failing.

This depression-associated reality is important. We know that patients struggling with depression are far less likely to take their prescribed meds, exercise, improve their diet, show up for medical appointments and cardiac rehabilitation classes, quit smoking, lose weight, or be able to manage their considerable chronic stress.

Ironically, that list of instructions is precisely what the same physician who first drops the diagnostic “heart failure” bomb upon them will likely be recommending in the very next breath.

Just because a medical condition has had its name for a long time, doesn’t mean that’s an excuse to keep it if it no longer fits, or – as in the case of heart failure – if it hurts people.

What’s a potential alternative name?

Dr. Stevenson prefers renaming this condition cardiac insufficiency, heart dysfunction, or cardiomyopathy.  Dr. Lown favours calling it stiff muscle syndrome. Cardiologist Dr. David L. Brown in St. Louis explains the condition to his patients as congestive heart dysfunctionScottish physician Dr. Trisha Elliott in Edinburgh has her own favourite French substitute: “insuffisance cardiaque”. 

Personally, I don’t care what the new name will be, as long as it’s no longer called FAILURE.

I urge those attending the Heart Failure Summit – and every other cardiologist everywhere who is treating patients with this diagnosis – to take a leadership role now in making this brave change.

Please, let’s put a collective stop to using words that hurt patients.

Name tag image: Settergren, Pixabay

Q:   What will it take to get the medical profession to correct the name of this diagnosis?

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NOTE FROM CAROLYN:   I wrote more about many types of heart disease in my book, A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).

See also:

Two ways to portray heart failure. One of them works.

When doctors use words that hurt

Would you drive your car if its brakes were “failing”?

Why aren’t more doctors like Dr. Bernard Lown?

30 thoughts on “Is it finally time to change the name ‘heart FAILURE’?

  1. Excellent article, Carolyn, and I agree. The term “failure” sounds so final and finite – and when applied to the heart it does terrify. Cardiac Insufficiency does sound like a much better term.

    Likewise the term ‘Heart Attack’ – as though our own hearts are attacking US. I far prefer the French version of this – ‘crise cardiaque‘ – a cardiac crisis, rather than an attack.

    You can do something about a crisis, take action, as opposed to feeling helpless in an attack.

    As a policy analyst, I know very well how much words matter. As a female cardiac patient, I’ve found the overall misogyny and shaming in health care (all fields, not just cardiac) definitely impact the patient in a very negative way.

    I recently had a bout of severe pericarditis. I wasn’t given ANY pain medication despite telling them that the pain was WORSE than the heart attack 5 years previous. Even after my husband harassed the ER personnel repeatedly to help because I was crying so hard. I was made, generally, to feel it was my own fault for being in that position, and the ER I once relied on, I no longer trusted.

    Liked by 1 person

    1. You’re correct Jacqueline – it’s not just in cardiology that women specifically face this. Have you read Maya Dusenbery’s book Doing Harm? (CAUTION: do NOT open this book unless you have taken your blood pressure meds!) It’s basically a history of modern medicine’s treatment of women. She suggests that your horrific experience in the ER is not at all uncommon. It’s appalling!

      Whenever I hear a nightmare story like yours (women’s pain being dismissed or minimized by clinicians), I ask myself if that scenario would have happened like that had it been a MALE patient screaming in pain. The pain of pericarditis (note to readers: inflammation of the pericardium, two thin layers of a sac-like tissue that surround the heart) has often been compared to heart attack pain. And pain is pain – why WOULDN’T Emergency staff offer pain relief?

      Thanks so much for the reminder that “failure sounds so final and finite”. Wish all cardiologists could read that reminder before they say the words “heart FAILURE” out loud to one more person…

      Like

  2. Thank you for another article which really hits the nail on the head. Medics might speak the same language as us, but many of the familiar words they use have different meanings in “medicalese” and this can cause immeasurable pain for those of us at the other end of the stethoscope.

    The medical world is full of language which can get in the way of “improving health outcomes” (Grrrr😠!). Like other professions and disciplines, the practitioners develop a different code for effective communication within their community but also, historically, to give them some degree of control over their special area of knowledge.

    This is no longer appropriate in a world where patient and medic have the same aim, language needs to be shared, along with understanding. People with health concerns now have more of a say in the way they are care for, it’s also time we had more of a say in how our concerns are labeled.

    Liked by 1 person

    1. Excellent points, Eva. Speaking medicalese makes sense when colleagues are talking shop (sort of a shorthand to save time) but when clinicians carry the same language over to “those at the other end of the stethoscope”, it can be inappropriate (and often even hurtful).

      My very favourite example of this jargon-gone-insane is a patient question on an online Q&A site called HealthTap, in which the patient asks “What caused my arm to hurt during my heart attack?” A cardiac surgeon replies (I am not making this up!):

      “The pericardium is innervated by C3,4,5 (Phrenic nerve). There may be some neuronal connections to the intercostobrachial nerves.”

      Let me repeat that the surgeon knew this question was coming from a PATIENT!

      There is apparently a movement in some areas of medicine (and even in some medical journals!) towards plain language. Could not come soon enough!

      Like

  3. Carolyn:

    Excellent topic. I was told by a cardiologist that because of my diagnosed heart failure, I had at the most five years, that I was going down — that it might be slow, but I was still going down.

    I have protested the diagnosis of “heart failure” with every cardiologist I have seen, but they just laugh and think as a psychologist I don’t know what I am talking about.

    It’s been fifteen years, and their failure diagnosis was a failure.

    I think I like the term “heart challenged” as the best alternative. Almost any alternative would be better, although I would not recommend “stiff muscle syndrome”, as this might be misinterpreted to apply to other organs.

    I hope you keep talking about this very important topic — diagnosing someone with heart failure is deliberately inducing depression among folks who all already challenged…

    Liked by 2 people

    1. Well said, Dr. Steve – “their failure diagnosis was a failure”. I’ll say…

      Telling a freshly-diagnosed heart patient that they have “at the most five years” left to live is appalling. I’m reminded of your foreshortened future‘ essay when I read that – most of us would throw up our hands and simply give up in despair…

      Your disclaimer about “stiff muscle syndrome” is duly noted. Right now, I’m leaning towards Irene’s suggestion (see comment below): “Not-As-Good-As-It-Could-Be Syndrome!”

      I WILL keep talking about this important topic – thanks for your ongoing encouragement. There just can’t be any good reason for the medical profession to cling to a “heart FAILURE” diagnosis much longer (other than, this is the way we’ve always done it…)

      BTW, the historic medical treatment for heart failure used to be bloodletting and leeches. Somehow, physicians were persuaded to give those up!

      Thanks for sharing your unique perspective…

      Like

  4. I have been saying this for years as well. This is scary to hear.

    I also used the words insufficient and challenged instead.

    My brother recently was told he had congestive heart failure and I had to remind him to think of it as a huge warning to work hard and reverse this. That word failure sounds final, when indeed so many heart patients are managed for a very long time when dealing with this.

    It sounds like a more immediate death sentence and as we know, attitude can be a big part of handling heart health. That word hangs very heavy over you when it’s said in cardiac care.

    Thank you for shining another light on an important heart health topic!

    Liked by 1 person

    1. That’s an important point, Annette: attitude IS a big part of being able to manage a cardiac diagnosis. That word failure does sound very final, and thank goodness you were on hand to reassure him that this diagnosis is NOT a death sentence…

      Like

  5. Carolyn, I have been using “cardiac insufficiency” for some time. I found “chronic congestive heart failure” inspired as much distress in people I told as it did in me years ago.

    Cardiac insufficiency is accurate (in my case) and perfectly clear.

    Liked by 1 person

    1. Thanks for that perspective, Alane. Hearing the words “chronic congestive heart failure” can indeed inspire distress. You’ve been on both sides of delivering that diagnosis – hope you are doing well.

      Like

  6. Perhaps ACI (Atypical Cardiac Issues) would be cheerier? And, yes, the word failure is horrific. Oh, the power of words! I remember reading about a cardiac patient who heard his doctor say he had a “terrific gallop” — which the patient took to mean a good thing.

    Going with failure, what if you went to a doctor with a higher-than-intended BMI and the doctor said you were suffering from “Thinness Failure”?

    Liked by 1 person

    1. Tracey, if my doc told me I had “Thinness Failure”, I’d head straight home for the Häagen-Dazs….

      That “terrific gallop” story is really compelling because it reinforces how much words matter – BOTH WAYS! My understanding is that the “gallop” sound (which is an unusual heartbeat with 3 or 4 beats, instead of the ‘normal’ two stroke “lub-dub” sound). It is rare, but in an older person typically it does point to heart failure (or should I say, points to ACI?!?) 😉

      Like

      1. If I recall, the man with the very strong gallop was elated, as he thought it was a good thing and then his gallop vanished w/in three months. Power of words.

        BTW, I nearly fell off my bed when I read that you were working on your annual report when you had your first heart attack … me too! Well, 2nd heart event, I had hidden the document from my boss as he had a way of mucking up the formatting before we went to the printer … so against corporate policy, I not only password protected the document … but then I moved it to a file folder named “Tracey’s Fibroid.” I figured no man would look there! LOL.

        Thennnn … when the ER doctor told me they were getting me set up for an emergency angioplasty … I said “Umm, can I just slide out of here for like an hour or two? I just hid this file from my boss, it’s the annual report, see … and there’s a deadline… “ to which he replied “This isn’t a day spa. No, you may not ‘slide out’ for an hour or two.”

        Liked by 1 person

        1. Oh Tracey! I’m laughing right out loud at your “Tracey’s Fibroid” file name. So brilliant… Your secret would have been safe from your boss, except for that little matter of the heart attack.

          “Can I just slide out of here?” turns out to NOT be as crazy or uncommon a question in mid-heart attack as you might think!! Our hospital’s cardiac social worker told me that patients in the ER often say things like, “Well, I have to go home right now, but I could come back later for this…” When the cardiologist came to the ER to see me during my own heart attack and explained to me what was happening (I think he was explaining – I could see his lips moving…), I interrupted him to ask “Should I make an appointment while I’m here to come back and get that done?” to which he said (a bit louder than absolutely necessary, I have always thought!): “NO!!!!! You’re going straight upstairs RIGHT NOW!!!!”

          But what about your annual report!?! Did you manage to get back to work after your hospital discharge in time to rescue the document from “Tracey’s Fibroids” before your boss was any wiser?

          Like

          1. My amazing work sister took the wheel from me and the annual report was birthed on time. I used the “Fibroid” file after my darling boss denied my FMLA request for part time work due to pericarditis. It was a very large fibroid that needed an entire legal team to extricate. 🙂

            I had a similar reaction when I finally agreed to do a c-section with my twins. “Hey, listen, I really need a mani-pedi an a steak and a baked potato. Can we just pencil me in for a c-section around 10am saturday morning? This way I could have a little break and some fun on a Friday night.”

            Liked by 1 person

            1. You are so funny, Tracey! Every woman, I’ve decided, needs to start a Fibroid file, just in case…

              If you don’t ask, you don’t get, am I right? So…. Did they agree to your 10 a.m. time slot request? And did you get out for that pre-Section Friday fun?!

              Like

  7. I agree. It is a dismal term and it does create a sad depressed feeling in the person. Even ‘insuffient’ is not so good. There has to be a better term, maybe Not As Good As It Could Be Syndrome.

    Liked by 1 person

  8. Hmmmm I agree with you it needs to be changed… but how to get physicians to change it I’m not sure.

    It truly is only recently they admitted there were 2 type of “heart failure”, diastolic and systolic, then they named it Heart Failure with and without preserved ejection fraction…. I forget the new initials they use.

    “Heart Failure” is a cluster of symptoms and doesn’t speak to the underlying causes which is an abnormality in the muscular layer of the heart. So I guess I might favor “Dilated Cardiomyopathy” and “stiff or rigid Cardiomyopathy” ???

    Maybe ask all the Heart Associations of the world to conduct research on the effects of the current name “heart failure” on those diagnosed with it…..Followed by a renaming competition.

    Liked by 1 person

    1. Thanks for this, Jill.

      How to get physicians to change the name? That’s the question! The same way other inappropriate names have been changed over the years.

      The name ‘mentally retarded’ is a good comparison. That name was introduced in the mid-1900s to replace the previous medical terminology which included both “imbecile” and “moron” – which at the time had seemed perfectly acceptable to physicians, until they weren’t anymore, and needed to be changed. And on September 13, 2013, the U.S. government’s Social Security Administration formally announced:

      We are replacing the term ‘mental retardation’ with ‘intellectual disability’ in our Listing of Impairments. This change reflects the widespread adoption of the term ‘intellectual disability’ by Congress, government agencies, and various public and private organizations.”

      To get to that widespread adoption of a new term to replace heart failure, I’d love to see more patients speaking up to their doctors. Like all name changes, this might be a tough slog at first, with the exception of some vocal champions like Dr. Lown and other visionaries who continue to carry the movement forward to their colleagues.

      Like

  9. Thank you! Couldn’t agree more. I read and appreciate your blog every week.

    And while we’re at it, how about banishing forever the ghastly medical terminology “incompetent cervix”. This demoralizing, emotionally loaded descriptor has caused so much pain to women having repeated miscarriage. Really…

    Liked by 1 person

    1. Oh my goodness! That’s such an apt example, Sara.

      So a woman hasn’t only suffered the emotional and physical pain of miscarriage, but she is also somehow to blame because her pesky cervix is INCOMPETENT!

      Yet doctors still say this hurtful word out loud to women every day (although I see that Mayo Clinic’s website has started to add “also called cervical insufficiency”, which suggests that they too realize it’s appallingly inappropriate terminology, but aren’t quite ready to stop hurting women by eliminating that descriptor once and for all).

      Like

  10. My father, a smoker, died at age 63 in 1996 from “congestive heart failure” after years of struggling with poor circulation, especially in his legs. I was surprised to learn years later what this diagnosis really meant and that you can have it and not die from it.

    I agree with you, Carolyn, that we need a different term. I like Dr. Stevenson’s first term best: cardiac insufficiency. The heart just isn’t pumping as well as it should, for whatever reason. Kind of says it all.

    Liked by 1 person

    1. Thanks for this perspective, Meghan. Many of us are also surprised to learn that you can have heart failure and NOT DIE. Is it any wonder we were surprised?

      For a long time, I didn’t know that the woman who always stood next to me in our Friday morning weight training class had been living with heart failure for years. She was a good example of the truth, as Dr. Lown explained it, that “a heart failure prognosis is no longer what it used to be.”

      I too like Dr. Stevenson’s suggestions for alternative names. I’d much rather be told that my heart is “insufficient” instead of “failing”!

      Like

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