Is heart “FAILURE” out? And heart “FUNCTION” in?

by Carolyn Thomas   ♥   @HeartSisters   

Recently, I was thrilled to read that New York cardiologist Dr. Anu Lala-Trindade had asked her audience at a heart failure conference in Cleveland why physicians were still using the word “FAILURE” to describe this condition.  As she smartly pointed out to her colleagues, pulmonologists who specialize in treating lung problems are not called “lung failure doctors”. Podiatrists who specialize in foot problems aren’t “foot failure doctors”. You get the drift.  Yet every day, cardiologists (mostly in North America) are still telling their patients out loud that their hearts are “FAILING” – as if they aren’t actually paying attention to the words they’re using.       .  

Cardiologist Dr. Lynne Warner Stevenson, a professor of medicine at Harvard University, is among a growing number of cardiologists who want to see the name heart FAILURE changed, as she explained to the Heart Failure Association of the European Society of Cardiology:

“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. We need to come up with a term that does not make patients ashamed.”

Deliberately instilling hopeless defeat or shame is bad doctoring, threatening to intensify the emotional distress that can so often accompany every cardiac diagnosis.

The name of this condition needs to change for two reasons:

1. It’s a cruel name that hurts patients.
2. It’s not accurate. The diagnosis does NOT mean the heart is FAILING.

One of my Heart Sisters readers told me that she didn’t know her own diagnosis until she arrived for her follow-up appointment and was horrified to see the Heart FAILURE Clinic sign over the door of the building where she’d been referred.

A number of clinicians have already begun to endorse changing building signage at their hospitals  – from Heart FAILURE Clinic to Heart FUNCTION Clinic. One such doctor is Dr. Sangjin Lee, a cardiologist and Section Chief of Advanced Heart Failure at Corewell Health in Grand Rapids, Michigan, who shared these words last year in the unfortunately named Journal of Cardiac Failure: ¹

“It is not uncommon when I meet patients for the first time in the office that I see their eyes stare at my white coat reading the label ‘Advanced Heart FAILURE’.

“Thus, from the beginning, we are fighting an uphill battle to help patients and families understand their heart condition. ‘Advanced Heart FAILURE’ conveys a sense of despair that not much can be done to help them. The truth of the matter is that a lot can be done.

“So we changed our clinic name from the Advanced Heart FAILURE Clinic to the Heart OPtimization and Evaluation Clinic –  the HOPE Clinic – with great positive feedback from patients about this change.”

A number of other cardiologists have also changed their professional titles on nametags, business cards and white coats – a change from Heart FAILURE Cardiologist  to Heart FUNCTION Cardiologist.

Yet  – unless physicians for some reason want to continue eliciting hopeless defeat in their heart patients – it’s not enough to simply change the visible signage. Does it even matter what those new signs or nametags or business cards or white coats say if the people working inside those buildings are telling heart patients that their hearts are FAILING?

Some healthcare professionals still insist, however, that a name which is all about the word FAILURE requires no change. As one American clinician told me:

”The name is used because that IS the official name for the condition. It’s used as the term to determine diagnosis and billing, and most journal papers use the term.”

That’s a textbook example of “But That’s How We’ve Always Done It”, the all-purpose excuse for maintaining the status quo when faced with growing calls to improve it.

That name heart FAILURE must be expunged from medical journals, from conference speaker slides, from textbooks, from medical school curricula, from cardiology societies and (yes, Americans!) from billing codes – but most importantly, from telling patients out loud that they have heart FAILURE.

Another editorial on this topic was published in the European Journal of Cardiovascular Nursing, suggesting that the term “heart FAILURE” is currently used not to describe a disease – but rather a complex clinical syndrome: ² 

“This means that it is not a single, well-defined disease, but rather a group of signs and symptoms that collectively indicate heart FAILURE. Other common labels – all of which are loosely defined – fall under the umbrella term of “heart FAILURE”.

The Australian authors added that the term ‘heart FAILURE’ can cause patients to feel scared and anxious about their diagnoses. It is the technical term for this syndrome, but it holds a dual meaning in ordinary language – and it’s far more than a simple word:

“The heart is commonly recognized as our most precious organ, symbolizing the very essence of our existence in almost every culture of the world. Followed by the word ‘FAILURE’, however, the term suggests that the organ which supports our life can no longer maintain its function.

“The fear and panic associated with this term can cause patients to feel hopeless about their condition, and may contribute to poor adjustment – which can interfere with a patient’s ability to perform vital self-care practices.”

We do know what that means: ineffective self-care (such as not taking cardiac medications as prescribed, or tracking daily body weight, or symptom monitoring) is responsible for approximately half of heart FAILURE-related hospitalizations.

But the Australian editorial also reminded us that the people who are actually living with heart failure use far simpler terms to describe their condition, such as bad heart, weak heart or heart trouble. This difference, the Australian authors believe, is likely the result of how a heart FAILURE diagnosis was first explained to patients: “It may even be due to some clinicians’ own discomfort in using the term ‘heart FAILURE’ with their patients.:

A number of cardiologists have explained how they try to break the news of this diagnosis in the nicest possible way in order to spare the patient the shock and despair of hearing that their heart is FAILING. One, for example, described online how he prefers to raise two fingers on each hand as air quotes whenever he tells his patients they have heart “FAILURE” – to reassure patients that the word “FAILURE” doesn’t actually mean what everybody knows it means.

What other medical diagnosis requires doctors to use air quotes?

And if you think that FAILURE doesn’t really mean “FAILURE”, then stop saying it!

Here’s another compelling study, this one from Milan, Italy. Researchers surveyed patients, their families and the cardiologists who cared for them about reactions to a heart FAILURE diagnosis.³  Researchers reported that over 80 per cent of the family caregivers and patients used words like “fear” and “anguish” to describe their own response to the initial diagnosis. Even years after first hearing that diagnosis, over 40 per cent of family members still felt “fear of sudden death of their loved one”.

But almost 70 per cent of the cardiologists, by comparison, used the word  “optimistic” to describe the patients’ initial diagnoses, and the physician narratives focused on “improvements obtained with treatments.”

Were these people talking about the same medical condition? Or were those cardiologists so numbed by years of doctor-speak that they were no longer capable of comprehending how frightening the word FAILURE can be to the average person?

Yet we know that, as I’ve previously written here, the history of medicine includes many other examples of conditions that have started off with one name which was later changed to something more appropriate.

Until 1982, for example, HIV/Aids was known as GRID (short for Gay-Related Immune Deficiency, even though over 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.

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

When Dr. Lala-Trindade (pictured here along with her colleague Dr. Robert Mentz) addressed that Cleveland conference, she knew what she was talking about. She is the Director of Heart Failure Research at Mt. Sinai Hospital, and Deputy Editor of the Journal Of Cardiac FAILURE. She and the journal’s Editor-in-Chief Dr. Mentz wrote a landmark 2021 editorial in the Journal of the American College of Cardiology which offered a glimmer of hope to those of us who have been lobbying for years for a name change – although they stopped short of recommending a name change.  But they did write:⁴

“Few words in the English language universally invoke the negative emotions of fear and disappointment as does the word ‘FAILURE‘.

If that sentence is truly what the two editors believe, then the name of their own journal strikes me as an ideal place to start. I wonder if, during their tenure as editors, they will be willing to drop the “FAILURE” and change their journal title to the Journal of Cardiac Function?

Personally, I don’t care what alternative name will one day replace heart FAILURE (although I did list a number of alternative name suggestions here, offered by a number of thoughtful physicians who support the change). 

What I do know is that we need a physician-led movement to stop using what the late pioneer cardiologist Dr. Bernard Lown called “words that hurt”. This name change won’t be easy, and the process can’t be completed overnight.

But please. Let’s just get this done.

 

1.  S. Lee et al. “The HOPE Clinic: More Than Just a Name Change”. Journal of Cardiac Failure. Volume 28, Issue 10. July 12, 2022.

2.  Ivynian SE,  Ferguson C,  Davidson PM. Editorial: “Time to Re-Think the Terminology of Heart Failure?” European Journal of Cardiovascular Nursing. 2019;18(8):648-650.

3.  Testa, M., Cappuccio, A., Latella, M. et al. “The Emotional and Social Burden of Heart Failure: Integrating Physicians’, Patients’, and Caregivers’ Perspectives Through Narrative Medicine.”  BMC Cardiovascular Disorders 20, 5/22 2020.

4.  A.Lala, R. Mentz. “Contemplation from Our Hearts: A Call to Shift From Failure To Function”, Journal of Cardiac Failure. Volume 27, ISSUE 4, P385, April 01, 2021.

LEAF IMAGE: Castleguard at Pixabay

 

 

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

NOTE FROM CAROLYN:  I wrote more about why we need to change the name of “heart FAILURE” 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 (please support your independent neighbourhood  booksellers) 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:

– Heart FAILURE vs. heart FUNCTION

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

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

– 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?