Chronic heart failure: the true heartache of living with “FAILURE”

by Carolyn Thomas     ♥    @HeartSisters 

 A small Australian study published this month explores two elements that seem pretty darned important to patients and their families following a diagnosis of chronic heart failure (CHF) – yet may often appear to be minimized or even dismissed by healthcare professionals.  In this study, participants were asked to report their lived experience through two key themes:  1. Heartache and 2. Living with Failure.             .

The word “heartache” is an interesting choice of words for academic researchers to use. Most academics (if they bother to even mention the emotional/psychological fallout associated with patients being told out loud by a cardiologist that their heart is FAILING) use doctor-speak words like “psychosocial impact”.   But the word “heartache” is a gut punch that tells it like it is. As the authors observe: “The life of those with CHF is filled with experiences that cause a wealth of emotional heartaches.”

Heartache, as Katie Palmer and her Australian research team defined it, isn’t a new name for the condition, but this:

“Heartache describes the emotions and emotional response caused by the patient’s experience with CHF, including shock, fear, uncertainty, shame and guilt. Disease terminology was found to be infrequently used, and the participants’ understanding of CHF was low – both of which could worsen their heartaches.”

Of course their “understanding” is low.  The “F-bomb” (for FAILURE) has just been deliberately dropped on their head!

The second theme in the Australian study was Living with Failureit describes the practical ways that those heartaches can change a patient’s daily life and decision-making:

“Poor communication could make their experience more difficult and frustrating, negatively impacting engagement with healthcare professionals.”

No kidding. Once the words “you have heart FAILURE”  have been aimed in your direction, chances are excellent that you will be so overwhelmed and frightened that any further words coming out of your cardiologist’s mouth will sound like Swahili.  And there goes your communication.

As I wrote in “Would You Drive Your Car if Its Brakes Were “Failing”? , we all know what the word “failure” means. It’s a thoughtlessly cruel word – and in cardiac circles, it’s not even accurate. As the Ottawa Heart Institute defines heart FAILURE:

“Heart FAILURE does NOT mean that your heart will suddenly stop working or that you are about to die. It means that your heart isn’t pumping as efficiently as it should to keep the blood flowing to the rest of your body.”

I’ve written about a previous study by Italian researchers that involved three groups of people interviewed about their own personal experience of a heart failure diagnosis:  patients, their family caregivers, plus the cardiologists who cared for them.  See:  A Patient, a Caregiver and a Doctor Walk into a Bar. 

The Italian researchers conclude:

“One of the most striking observations in the analysis highlighted a strong difference between how heart failure is perceived by patients, by their caregivers, and by the heart failure specialists.”

For example, over 80 per cent of the patients and their family caregivers studied used words like “fear” and “anguish”to describe their own response to the initial diagnosis of heart failure. Even years after first hearing that diagnosis, over 40 per cent of family caregivers reported that they still felt fear of the sudden death of their loved one”.

Yet about 70 per cent of the cardiologists, by comparison, used the word  “optimistic” to describe their patients’ initial diagnoses; physician narratives also included “improvements obtained with treatments.”

Cardiologist Dr. Lynne Warner Stevensona professor of medicine at Harvard University, urges her colleagues to get rid of the name 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 worsen the severe emotional distress that can so often accompany a 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 the condition.

A number of hospitals with Heart Failure Clinics have already changed their hospital  signage to Heart Function Clinic  in response to the movement in cardiology to change the hurtful name of this disorder. (For some physician-submitted optional name suggestions, read “Is It Finally Time to Change the Name Heart FAILURE?”)

But even with a shiny new Heart Function sign posted on the outside of the building, if the physicians inside the building are still telling patients that their hearts are FAILING, then what good is that new sign?

We need to change the name of the clinics, the professional societies, the medical school lessons, the cardiology journals and of course, the name of this condition.

Think this can’t be done? We already have many examples of other no-longer-appropriate disease names in medicine that have been successfully changed over the years.

Words matter. When will it be heart FAILURE’s turn?

  1. Katie Palmer et al. “The Heartache of Living with Failure: The Experience of People with Chronic Heart Failure.”  Collegian: The Australian Journal of Nursing Practice, Scholarship and Research. October 1, 2022.
  2. Marco Testa et al. “The Burden of Heart Failure: Physicians’, Patients’, and Caregivers’ Perspectives Using Narrative Medicine”. Journal of Medical Anthropology. June 2020.

Image:  Lyrics to“It’s a Heartache” sung by Bonnie Tyler, 1978. Songwriters: Steve Wolfe, Ronnie Scott. Lyrics ©Sony/ATV Music Publishing LLC, Universal Music

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Q: Have you ever experienced heartache when hearing a new diagnosis?

NOTE FROM CAROLYN:   I wrote much more about adjusting to a new cardiac diagnosis 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 30% off the list price).

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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?

Heart FAILURE vs. heart FUNCTION

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

CardioSmart’s  patient information on Learning to Live With Heart Failure

10 thoughts on “Chronic heart failure: the true heartache of living with “FAILURE”

  1. I am so glad you are writing this blog again. Very helpful and yes the language is awful.

    I worked in women’s health care for years and there is an equally awful label in reproductive health. Incompetent cervix. So hurtful.

    Liked by 1 person

    1. Hello again Sara – thanks so much for your kind words.

      That “incompetent cervix” terminology is utterly offensive and hurtful – especially when it’s delivered, as I’m guessing it might be, to a woman who has just had – or is in danger of having – a premature birth or the loss of an otherwise healthy pregnancy. Talk about patient-blaming! Ironically, there’s already a term that is used to define this pregnancy issue: “cervical insufficiency” which carries no blame or shame with it. Why on earth should ANY physician ANYWHERE in reproductive health insist on saying “incompetent cervix” out loud to any woman anymore??!

      Aarrrrgh!

      Take care, stay safe. . . ♥

      Like

  2. My cardiologist consult was exactly like the above stated. “You need OH surgery and also will need an LVAD implanted (Left Ventricular Assist Device) and if you don’t have surgery soon, you will need a heart transplant…”

    It was during Covid, so no support person! That night I ended up calling 911 for ambulance and help. My first experience with anxiety.

    Liked by 1 person

    1. Oh Linda. . . This is inexcusable! There are ways to break really bad news and there are ways NEVER to break bad news. Some physicians are better at this than others, but we’re not looking for a high-level psychotherapy session here – just a kind manner, a compassionate and clear explanation of what’s happening, and a person who can immediately refer you to another resource to learn more about that mumbo-jumbo you just went through – ESPECIALLY when the doc sees that you are by yourself.

      No wonder you were anxious when you got back home that day. I hope that the paramedics were better communicators than that doc was.

      You didn’t mention when this Emergency visit happened – I hope that since that horrible “conversation”, you were able to get the care that you needed.

      Take care, stay well. . . . ♥

      Like

  3. Hello Carolyn, I get so discouraged some days and I don’t even have that diagnosis.

    It’s a defeating name with hopelessness pervading. Heart insufficiency seems like it might be more accurate.

    Thanks to your very informative blogging, I just graduated as a WomenHeart Champion. It was a fascinating experience and I’m grateful I learned about it here.

    Cheers, Tomi

    Like

    1. Hello Tomi and thanks so much for taking the time to comment today. CONGRATULATIONS to you on graduating from your WomenHeart Champion training! I understand that the training has been virtual for the past two years due to COVID – did you attend in person this year, or virtual again?

      I found my own experience at Mayo Clinic to be unforgettable and truly life-altering. I hope you enjoy putting what you learned into practice as much as I have over the years.

      Take care and stay safe. . . ♥

      Liked by 1 person

      1. Hi again. We were the first in-person group since COVID, so everyone was grateful to be there. We even got the tour at Mayo Clinic with Dr. Hayes leading. They noted they used to do 4 days, but were trying to pack essentials into 2 days. It was a lot to take in. Wonderful dedicated people.

        Liked by 1 person

        1. Yes, our class of 2008 was at Mayo Clinic for four full days – exhausting but so exhilarating to be learning from the rock stars of cardiology. Dr. Sharonne Hayes is so wonderful – this training program for women with heart disease was her baby, and it’s great to know she’s still there year after year!

          Like

  4. I totally agree. My clinic is one of the top in the country and I love it, but I am working on them to change the name of the heart failure area. It is currently called “The Advanced Heart Failure clinic of…”

    For some time I have thought this was totally unnecessary, and was glad to see your story on this.

    Liked by 1 person

    1. Hi Dawn – I agree 100% – somehow “Advanced Heart Failure” Clinic sounds even worse! It sounds like you’d already have one foot in the grave. . .

      Not only unnecessary, but hurtful. Keep working on them until they ‘get’ it.
      Take care, and stay safe out there. . . . ♥

      Like

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