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 they have heart FAILURE? (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?
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?
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 20% off the list price).
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 ).
Is it finally time to change the name ‘heart FAILURE’? (includes some appropriate alternative names recommended by cardiologists)