“Heart Failure: it’s time to finally change the F-word”: my Editorial in BMJ Open Heart

~ Carolyn Thomas

by Carolyn Thomas    ♥   @HeartSisters

I’m pleased to share with my Heart Sisters readers some terrific news:  the British Medical Journal (known everywhere as the BMJ) invited me early in 2023 to write an Editorial for BMJ Open Heart about an important cardiology issue that I’ve been lobbying, writing and speaking about over many years – and that Editorial has now been published.

I’m thrilled of course with this level of international interest.  (Note to my American readers: you’ll notice British spellings throughout e.g. organise, minimise, etc. Do not be alarmed. They’re not mistakes). Here’s the text content, FYI:  

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One of the organisers of an upcoming medical conference on heart failure told me that the theme of this meeting ‘was intended to provide hope’.  Noble intention, indeed. Yet 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’.

I often hear from my Heart Sisters readers who have sat through that life-changing conversation with their cardiologists. Those who have heard the diagnosis firsthand almost always compare this frightening moment to a ‘death sentence’.

Here’s a fairly typical narrative, 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.”

There is nothing hopeful about that.

The late pioneer cardiologist Dr. Bernard Lown called cruel names like this ‘words that hurt’.1   In his book, The Lost Art of Healing, Dr. Lown wrote that deliberately using alarmist language (specifically, heart failure) is what otherwise caring physicians believe might somehow convey a sense of urgency, thus motivating patients to comply with doctors’ orders.

But he believed that, ironically, the exact opposite can happen instead. Trust, reassurance and helping to educate the patient are what will help to form meaningful partnerships. Yet instilling anxiety threatens to intensify the severe emotional distress that so often accompanies a frightening new diagnosis. Dr. Lown added: “The end result is that doctors justify their ill-doing by their well-meaning”.

I’ve observed that many physicians still insist that they are somehow able to minimise the traumatising effect of hearing the words heart failure by immediately reassuring a terrified patient that this name doesn’t really mean that the heart is failing.

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

Those of us who speak English already know what that word ‘failure’ means. Crop failure. Failed algebra. Engine failure. Failed marriage. Heart failure.

Think about this question, for example:  Would you drive your car if your brakes were failing? Of course you wouldn’t.

And the word ‘failure’ is not even a particularly accurate descriptor of this condition, which generally can be described as the heart not pumping blood as well as it should.

Like so many other scenarios in the history of medicine, the treatment of heart failure has profoundly changed over time. Doctors abandoned blood-letting and leeches long ago – likely with less resistance than currently exists to finally changing its hurtful name. As one American cardiologist explained to me, “We can’t change the name because it’s in our billing codes”.

Yet throughout the history of medicine, we know that many other conditions have started off with a name that was later changed to something more appropriate.

Until 1982, HIV/AIDS, for example, 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 a little girl, 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.

Fortunately for heart patients, other cardiologists such as Harvard professor of medicine Dr. Lynne Warner Stevenson are showing leadership of a growing movement in support of a less-cruel name change. In 2017, Dr. Stevenson told an audience of her colleagues at the fourth World Congress on Acute Heart Failure in Paris:

“We need to call it something else! Words are hugely powerful, and heart failure’s name dooms any progress against the disease. Efforts to prevent, diagnose and treat the disease would go better if we could only jettison that unfortunate word ‘failure,’ its hard-wired albatross.”

Dr. Stevenson also offered several alternative names including cardiac insufficiency, heart dysfunction or (her favourite) cardiomyopathy.

Some Heart Failure Clinics in North America have also taken steps to distance themselves from the F-word by installing new Heart Function Clinic signage outside of their hospital wings. But despite what appears to be a progressive step, it hardly matters what the sign outside a building says if the doctors inside the building are still telling patients out loud: “You have heart failure!”

Whatever the diagnosis of heart failure is called in the future, using its current cruel name must be stopped. We need a systemic physician-led movement to stop using catastrophic language that clearly contributes to patient despair.

Please make it stop soon.

.

Carolyn Thomas is a heart patient on the west coast of Canada. She writes about women’s heart health on her blog Heart Sisters .  She is also the author of A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press; foreword by Dr. Martha Gulati)

 

Reference:

  1. Bedell SE, Graboys TB, Bedell E, Lown, B.  “Words that harm, words that heal.” Arch Intern Med 2004;164:1365–8.  CrossRef  PubMed  Web of Science  Google Scholar    doi:10.1001/archinte.164.13.1365
    Footnotes
  • Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
  • Competing interests: None declared.
  • Provenance and peer review:  Commissioned; externally peer reviewed.

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NOTE FROM CAROLYN:   I’d like to thank BMJ Open Heart Editor-in-Chief Professor Pascal Meier and the BMJ editors, reviewers and staff for elevating what started as a patient opinion piece to an Editorial. I’m especially grateful to Christine Janssen-Seijkens, the endlessly helpful Editorial Assistant for BMJ Open Heart.  She was so kind and generous despite working with a heart patient/author who was unable to open a Scholar One account – because the first required field in the online account application asked “What is the name of your Institution?”  Christine stepped in immediately to help, week after week, step by step – resulting in much more work for her, and so much less stress for me.  ♥ ♥ ♥

UPDATE:  April 8, 2024:  The journal BMJ Open Heart  published an editorial called “New Era in Heart Failure Management: Implementing Cutting-Edge Therapies Effectively” which cited my Editorial:

“The Topic Collection includes the Editorial from Carolyn Thomas, ‘Heart failure: it’s time to finally change the F-word’, which represents the patient’s voice and addresses the problem of patients’ perception of the term heart failure. It discusses how that may affect patients, causing fears, emotional distress and overall quality of life. The editorial aims to draw the cardiology community’s attention to this issue and suggests considering several alternative names, including cardiac insufficiency, heart dysfunction or cardiomyopathy.

Published by Carolyn Thomas

23 thoughts on ““Heart Failure: it’s time to finally change the F-word”: my Editorial in BMJ Open Heart”

  1. Pingback: Journeying Beyond Breast Cancer

  2. 👏👏👏🎉🎉🎉
    Super Congrats from the HeartCharged community! And a huge thank you for doing this! So needed! We at HeartCharged are 100% with you!!!

    Here’s us in our 20’s going for an appointment and seeing the ‘welcome’ sign shouting ‘Heart Failure Clinic’ and feeling depressed and out of place and worried. It’s such a confusing term. And sounds so final – when it really isn’t.

    We stand with you!

    Here’s to change!

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    1. Hello Hannah and Bethany, and thanks so much for weighing in here – especially as young heart patients diagnosed four days apart with a serious cardiac condition (hypertrophic cardiomyopathy – HCM). I know that you more than most people are very aware of how much words in medicine matter when those words are directed at you specifically.

      You are doing great work in helping to warn people of the risks of sudden cardiac death, especially in young people.
      I’m wishing a happy (and healthy!) New Year to each of you! ❤️ ❤️ ❤️

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    1. Thanks so much, Cheryl. I have a weird feeling lately that somehow, someday, and sooner rather than later (she said optimistically!) forward-thinking cardiologists (most of them female so far) who are already out there trying to convince their colleagues of the need for a name change will be successful at last.

      After the year you and your family have had, I sure hope that when you turn the calendar over to 2024, the year ahead will bring lots of GOOD NEWS and happy times. ❤️

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  5. Congratulations on your editorial in the BMJ!

    The more exposure to this objectionable diagnosis term, the better.

    Wishing you peace and joy this Christmas,
    Carol C

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    1. Hello Carol – Thanks very much! It’s pretty exciting for a patient to have this rare opportunity! And I agree 100%: this morning, a friend reminded me of a famous quote that echoes your observation about more exposure: “The way to right wrongs is to shine the light of truth on them!” (from Ida B. Wells)

      May you enjoy peace and joy this Christmas and beyond, too!

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  6. Thank you, thank you, thank you for your continuous advocacy on behalf of ♥️ patients, particularly women, everywhere.

    It will bear fruit someday. As you said, if not in your lifetime, then those you have inspired will continue to carry that torch.

    Merry Christmas 🎄

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  7. Congratulations on breaking through the inner sanctum of medical publishing!

    Here’s hoping that the spark you’ve provided lights a fire under someone in the medical field.

    When it comes to fostering change, what seems soooo obvious to us often needs to be repeated over and over to break down barriers in others.

    Constancy and patience will bear fruit!

    Merry Christmas!

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    1. Thank you Jill! I doubt if we will see the hurtful name of heart “failure” changed in my lifetime – but I’ll try to keep up the spark! What’s really encouraging to me are public statements supporting the name change from cardiologists like Dr. Anu Lala-Trindade who is the Director of Heart Failure Research at Mt. Sinai Hospital and Deputy Editor of the unfortunately named “Journal Of Cardiac FAILURE” (now there’s a medical journal whose title needs to be changed! Yesterday!)

      She recently asked her heart conference audience WHY cardiology continues to cling to the hurtful name heart ‘failure’. She observed that, when we see a podiatrist to help us with serious foot problems, for example, we don’t say we’re going to the Foot Failure Doctor! And she calls the name heart failure “intrinsically awful”. (Now if only she could work on the title of her journal).

      I wonder sometimes if the doctors who treated AIDS patients in those early pre-1982 days fought against changing the old name “GRID”?

      Merry Christmas to you too! ❤️

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      1. One of my “name change” experiences recently has been with Autism – now referred to as Autism Spectrum Disorder.
        My son, born in the early 1980s was labeled with no less than 8-10 different mental health diagnoses while he was growing up. At the age of 40, he has finally been diagnosed with ASD Level 1. He is going through a huge identity crisis as he discovers many of his childhood behaviors that he was punished for were quite normal for someone on the autism spectrum.

        But in the 1980s and 90s kids didn’t usually qualify as Autistic unless they sat in a corner, spun plates and were non-verbal.

        I’m thinking that “Heart Failure” like “Autism” may need to be recognized as a Spectrum Disorder, rather than a single diagnosis. It has already expanded to include HFpEF and HFrEF

        Maybe it is COSD Cardiac Output Spectrum Disorder or CMSD Cardiac Muscle Spectrum Disorder.

        Or maybe, like the new jargon of neurodiversity, we are just Cardiodiverse? 😉

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        1. I like that option of viewing medical conditions as being on a spectrum, Jill. It’s good that your son has finally landed on a diagnosis that seems to fit better than the 8-10 previous ones that didn’t. Back when he was little, we didn’t have successful, high-functioning independent people like Temple Grandin talking about their autism diagnoses. One of my very favourite movies is Snow Cake with Sigourney Weaver and the late Alan Rickman teaching us so much about how “normal” what used to be considered NOT normal is for so many. For example, at one point, Sigourney’s character gives a big sigh while Rickman is speaking to her, stands up and says “I’m tired of talking to you now!” and walks out of the room. I cannot tell you how many times in my life I’ve WANTED to say that when others drone on and on – but I was a rigidly polite rule-follower in those days!

          I love your Cardiodiverse label!!! It’s so useful, applies to so many of us! I think you may be on to something!

          Thank you Jill! ❤️

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        2. Congratulations on getting published in the prestigious BMJ! Excellent arrival. Thank you for your persistence. I hope your holidays are joyous and that you are feeling safe in your home again.

          Sara

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          1. Thank you, Sara – I hope your holidays are also filled with lots of joyful moments!
            I’ve just returned from our traditional Christmas Eve feast hosted at my daughter’s home – a beautiful evening for all. I’m trying to focus more on these beautiful family times, while taking steps that I hope will help me feel safer in my own home.

            Merry Christmas and Happy New Year to you. . . ❤️

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  9. I don’t have a problem with this term. I think the way to offset the diagnosis is to be encouraging about treatment and the possibility for patients to have a longer lifespan due to drug choices. I don’t think you can deny that it’s a chronic illness and possibly terminal at some point.

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    1. Hello Sandy – it’s challenging, if not unrealistic, for clinicians to be able to be “encouraging” while continuing to use the word “failure”. That’s the point. One cardiologist told me, for example, that he tries to minimize the hurtful effect by wiggling two fingers on each hand as air quotes whenever he uses the word “failure” out loud – to indicate that he doesn’t really mean failure. What other medical diagnosis requires air quotes to be appropriately understood? Nobody is suggesting that this isn’t chronic and possibly terminal (as are all forms of cardiovascular disease) but I believe that the late Dr. Bernard Lown was correct: words matter.

      Thanks for sharing your perspective and Happy Christmas. . . ❤️

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      1. I been given zero encouragement from any cardiologists I’ve seen, including Mayo Clinic. I have not found Cardiologists to deal in that. Online support groups understand encouragement.

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        1. I agree – online support groups understand encouragement, no matter the diagnosis being discussed. But it’s cardiologists who are insisting on the hurtful name in the first place. 😦

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