by Carolyn Thomas ♥ @HeartSisters
A number of cardiologists seem to be revisiting the warnings of their late colleague Dr. Bernard Lown, who often cautioned physicians against using “words that hurt“ – specifically, the name heart FAILURE * (what he termed “doom forecasting”). Imagine being a patient hearing for the first time the words, “You have heart FAILURE.” A terrifying – and worse, often inaccurate – name. I’ve been told that changing the name of this condition would be impossible. But a recent editorial in the Journal of the American College of Cardiology has suddenly offered a glimmer of hope.
This is what cardiologists Dr. Anuradha Lala and Dr. Robert Wentz (who is also the journal’s editor-in-chief) said: (1)
“Few words in the English language universally invoke the negative emotions of fear and disappointment as does the word ‘failure’.“
My own wonky heart skipped a beat when I read that. Could this actually be what I’d thought was impossible? Could this be the visionary announcement I’d been longing for, namely let’s stop telling heart patients out loud that their hearts are FAILING. See also: Would You Drive Your Car if Your Brakes Were Failing?
Some cardiologists continue to defend the name heart FAILURE – even as they explain, as one did recently: “I always use ‘air quotes’ around the name to indicate to my patient that I don’t really mean “FAILING.”
But what other medical diagnosis requires wiggling fingers to indicate that what doctors are saying doesn’t actually mean what they’re saying? And if they don’t mean it, why keep using that name – unless perhaps to deliberately frighten already-overwhelmed patients?
The late Dr. Lown believed that “instilling anxiety by using alarmist language like heart FAILURE is sometimes what a caring physician may do in order to convey a sense of urgency, thus hoping to ensure that the patient will comply with recommendations.” But even in non-emergency situations, he said, the physician may believe that these words are actually necessary to persuade the patient. “The end result is that doctors justify their ill-doing by their well-meaning.“
Drs. Lala and Wentz stopped short of advocating a wholesale end to this cruel name, but did support greater adoption of the term “heart function” instead of “FAILURE” when communicating with patients, and included these observations on how to communicate this diagnosis without demoralizing those patients.
“Focusing on ‘function’ instead allows for speaking about prevention and lifestyle, whereas ‘failure’ implies that we’ve reached some end of the spectrum that may not necessarily be addressable.
That is precisely the point of changing the name. The HeartLife Foundation, for example, is the national voice for heart failure patients and their families in Canada (founded by two heart transplant patients, Dr. Jillianne Code and Marc Bains). Their non-profit organization boasts a compelling tagline message that truly speaks to others with lived experience:
It’s About Life. Not Failure.™
Some healthcare professionals still believe, however, that a name which is all about the word FAILURE requires no change. As one clinician told me just this week:
” The name is used because that IS the official name for the condition. It’s used as the term to determine diagnosis and billing; most papers use the term, etc.”
This is a textbook example of “But That’s How We’ve Always Done It”, the all-purpose excuse for maintaining any status quo.
Yet throughout the history of medicine, other conditions have in fact started off with an official name which was later changed to something more appropriate. Until 1982, HIV/Aids was known as GRID (Gay-Related Immune Deficiency) even though about half of the patients diagnosed with the syndrome were not gay. Hence the need for their new name. And just like our official name heart FAILURE, the official name GRID had also been used in diagnosis, billing, research, etc.
Maybe it’s time to believe in the impossible?
♥
GOOD NEWS DEPARTMENT, December 2023: The British Medical Journal has published my Editorial called “Heart Failure: It’s Time To Finally Change the F-word“ in BMJ Open Heart. This project began as a heart patient’s opinion piece, but ended as an Editorial (in my experience, it’s very rare – almost unheard of! – to invite a lowly patient to write an Editorial in a medical journal). Thank you BMJ Open Heart editors, reviewers and very helpful staff for this milestone! ♥
1. A. Lala, R. Mentz. “Contemplation from Our Hearts: A Call to Shift From Failure To Function”, JACC, Volume 27, ISSUE 4, P385, April 01, 2021.
2. Albert, N. “Take a Deep Dive Into Patients’ Perceptions of Living With Heart Failure”, Journal of Cardiac Failure, Volume 27, Issue 2, February 2021, Pages 261-262
*DEFINITION of HEART FAILURE: a chronic progressive condition that occurs when the pumping action of your heart is not strong enough to move blood around, especially during increased activity or under stress. In addition, the heart muscle may not relax properly to accommodate the flow of blood back from the lungs to the heart. (Heart and Stroke Foundation)
Image: Mohamed Hassan, Pixabay
Q: Will we ever be able to change the hurtful name, heart FAILURE?
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NOTE FROM CAROLYN: I wrote more about doctor-patient communication in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (and use their code HTWN to save 30% off the list price).
See also:
Why aren’t more doctors like Dr. Bernard Lown? (More on this pioneer cardiologist and Harvard professor: Dr. Lown was also the author of The Lost Art of Healing: Practicing Compassion in Medicine, the brilliant inventor of lifesaving patient interventions, and co-founder of International Physicians for the Prevention of Nuclear War, for which he was awarded the 1985 Nobel Peace Prize. He died on February 16, 2021 ).
Would you drive your car if its brakes were “failing”?
Is it finally time to change the name ‘heart FAILURE’? (includes some appropriate alternative names recommended by cardiologists)
Two ways to portray heart failure. One of them works.
Heart Sisters 
Nice blog post, Carolyn. I gained knowledge after reading this. Thanks for sharing.
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Hi Carolyn,
Words have so much power, and in a medical context, even more so. Just because something’s always been done or said a certain way does not mean it can’t be changed. It seems like the term “heart failure” should be a fairly easy term to “fix”, but alas, we know better.
I remember when my dad was diagnosed with congestive heart failure, it was a difficult phrase to come to terms with. And then there are all those “stages of failure”!
I’m reminded of another bothersome phrase too often heard in Cancer Land, “the patient failed treatment”. Umm no, as the late Barbara Brenner said, “Patients don’t fail treatments. Treatments fail patients.”
Amen.
Great post. As usual.
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Hi Nancy – OH! That “patient failed treatment” phrase is horrid.
We all know what the word “fail” means. To attach it to the PATIENT who did the failing is a slap in the face.
Hmmmmm…. maybe if the patient had had the CORRECT ATTITUDE, or had been a better FIGHTER, the treatment may have “succeeded”— ;-( So offensive.
And for healthcare professionals to choose to deliberately say things like that out loud to patients or their families is unacceptable. Arrrgh….
I’m increasingly hopeful (sort of!) now that respected cardiologists are starting to chime in to support trashing the term heart FAILURE, it’s just a matter of time. As one cardiologist pointed out to me, this kind of change would also mean changing the name of international societies and journals. My reaction to that: “YES! Let’s do it!”
Take care, and please stay safe. . . ♥
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Hi Carolyn,
I am one of the people out here with Congestive heart failure and being one hundred % honest with me is the key to my survival. My heart hospital has a full floor for heart failure patient with 4 arms for patients and only those in the worst conditions make it there.
People on that floor aren’t up and walking, they didn’t expect me to be up and walking. My cardiologist had seen me several times and not knowing the severity of my condition I kept asking to go home.
He told me if I could walk around the full floor after breakfast, lunch and dinner I could go home the next day. We had had several code black, one in my arm. When they move the body they close all doors so that you don’t see it. I was about to take my after lunch walk when one of the nurses told me I had to stay in my room with the door closed and she would come and get me when I could take my walk. All of the arm doors were closed and I turned around to see where I belonged.
I only freaked out because my cardiologist hadn’t told me. I went right back in and told them I was in the wrong place and they needed to move me. I was very loud and very insistent that I be moved . They took me back to my room, had me lay down and put the rails up.
My doctor didn’t tell me but it was the transparency I looked for. The nurses sent for him.
Knowing what I have to work with is very important and telling patients the full truth is very important to them learning to live with their conditions.
Take care,
Robin
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Hello Robin – I’m so sorry you had that dreadful experience in the hospital. I agree with you: transparency and the truth are critical to doctor-patient communication. This is as true for heart patients as it for cancer patients or anybody else facing a very serious diagnosis. We need to know.
What I’m writing about here is the language that physicians choose to use in being transparent. It’s important that a serious discussion about diagnosis is not sugar-coated to deceive or distract a patient, but that does not mean using hurtful language to describe that diagnosis is a better choice. It is not! The example of the heart patient who learned of her diagnosis only when she saw the big HEART FAILURE CLINIC sign above the door (as I mentioned to OlderRunner, see below) should simply not happen.
As you said, you did NOT know the severity of your condition at the time. But how you learned about it (e.g. while dead bodies were being wheeled out of your ward) was the very WORST way to learn. And what you likely learned at that distressing time was that heart FAILURE must mean an immediate death sentence. Yet this isn’t what it meant – otherwise you wouldn’t be writing to me today.
Take care, and stay safe out there. . . ♥
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While we’re at it, let’s advocate for a change in the ob/gyn. I worked for years in women’s health and cringed at the term incompetent cervix. Really!
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Oh good grief!!! Is it possible that healthcare professionals can actually say that out loud to a woman without THINKING about what they’ve just said?!? As if women hearing that are not feeling bad enough already…
Reminds me of something else Dr. Bernard Lown once said that may explain this example of utter doctor-patient disconnect: “Unfortunately, medicine encourages ‘detached concern’ – which devalues subjectivity, emotion, relationship, and solidarity…”
Many studies have suggested that by year 3 of medical school, students’ sense of empathy starts to decrease. That must be the only explanation for this cruelty.
Take care, Sara and stay safe… ♥
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It’s simply egregious for a doctor to use as an excuse to maintain the status quo he’s comfortable with it by saying it would upset the diagnosis and billing codes. Sheesh. What does the patient care what the billing and diagnosis codes are? What matters is what the doctor SAYS. Every time I think I’ve heard it all. . .
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I agree, Holly. I suspect this was a knee jerk NO response based on immediately viewing only the problems and obstacles in making any big change – far better just “to keep on doing what we’re doing…”
Reminds me of an ongoing debate in our former neighbourhood. Although a small number of homes at our end were built on Robert Street, for some reason (buried in history) our actual official address was the cross street nearby, which meant years worth of confused delivery drivers (or first time dinner guests!)
Every time we surveyed the neighbours in hopes of petitioning the city for an official street address change, one elderly couple ferociously opposed it for one reason: “The mailman might not find us to deliver our pension cheques!” It was years after moving to my current home when one day I heard from a former neighbour that the mailing address was finally changed – because that elderly couple had died.
Perhaps that’s what we’ll have to wait for here too?
Take care, stay safe. . . ♥
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Unfortunately, if that elderly couple had someone else living there who stayed after they died, probably that person would also continue obstructing rationalizing the address. That’s where doctors seem to be stuck – there’s always someone to maintain the status quo because it doesn’t require any change.
I got my own heart failure diagnosis in a situation of such trauma overall that “failure” didn’t even register with me 🙂 So I have not always quite understood the big deal about that term. You’ve educated me about that, as well as so much heart related! I will try to remember to suggest to doctors each time I hear the term that they consider something less pessimistic. I don’t, alas, remember what you’ve suggested as alternatives! Is that brain failure? 🙂
Holly
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I think you’re right, Holly. Changing the status quo (the way we’ve always done it!) is often a fight however you look at it. It’s the law of inertia (Newton’s First Law): “If a body is at rest or moving at a constant speed in a straight line, it will remain at rest or keep moving in a straight line at constant speed unless it is acted upon by a force.”
The trouble here is that the FORCE for change has been puny, until very recently. I know I’m not the only one (including some pretty vocal cardiologists, I’m happy to say) who are strong advocates for a less hurtful name (Harvard’s Dr. Lynn Warner Stevenson, for example), who says:
“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.” But until lots more respected voices come forward (DOCTOR VOICES, not patient voices like mine that are easy for docs to dismiss), we’ll still be having this discussion a decade from now. . . Examples of her suggested alternative names, by the way, can be found in this post.
You raise such an important point: HOW doctors break the news to people who are often very ill, overwhelmed, incapable of comprehension and in denial. This news can go right over their heads (like the reader I mentioned to OlderRunner, see below, whose first hint was seeing the sign HEART FAILURE CLINIC over the door!) OR at the other extreme, another reader who left her doctor’s office in complete terror, walked very slowly across the hospital parking lot, sat in her car, but was too afraid to start the car to drive home because she was convinced that she might die at any moment. Both examples = dreadful for patients.
PS Forgot to add: I sure hope that forgetting names doesn’t mean brain failure – or I’d have that, too!
Take care, and stay safe. . . ♥
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Whenever I think that humans are incapable of changing, I remind myself of the habit of smoking and the drastic change from socially expected to socially unacceptable in just a few decades.
But the public has little input into medical jargon. Cardiologists and others would need to champion the change.
The problem with heart failure is that very recently Medicine has invested heavily in changing the names of Congestive Heart Failure to Heart Failure with reduced Ejection Fraction and Diastolic Heart Failure to Heart Failure with preserved Ejection Fraction.
So the removal of “failure” from diagnoses may take a while.
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Hello Jill – smoking is such a powerful example of a societal change. Remember when doctors had ash trays in their offices, and even appeared in cigarette ads?
The editorial I quoted from the Journal of the American College of Cardiology was in fact responding to the newly announced “2021 Expert Consensus Decision Pathway for Optimization of Heart Failure Treatment” – which included both recommended treatment and definitions of different types of the condition.
The good news is that this JACC editorial was published in response to this document – and it specifically mentioned the importance of communicating the diagnosis to patients without demoralizing them. So – maybe a start?
Take care, stay safe. . . ♥
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I agree that the name needs to be changed. My dad had heart issues and the doctor did tell him it was heart failure. Fortunately, he didn’t hear well and didn’t hear him.
But, then, when you went to other doctors, they would ask, “Have you ever been told you have heart failure?” and I’d have to answer yes for him, and then explain that it didn’t mean his heart had failed but just wasn’t working as well as it used to.
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This is a good reminder that people who don’t hear well always need somebody to accompany them to these appointments! Another reader once told me that the first she learned she had heart FAILURE was the day she showed up for her first post-diagnosis appointment at the hospital and saw a big sign over the door she was about to enter that said HEART FAILURE CLINIC.
Take care, stay safe. . . ♥
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WOW. That would be a shock.
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Can you image that shock?!? Her first thought was that she must be on the wrong floor. Some clinics here in Canada have already changed their name to HEART FUNCTION CLINIC. That seems like an easy first step!
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That’s great! They all need to do that.
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