• Heart Failure
• Palliative Care

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 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. But 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 (https://www.myheartsisters.org) and is the author of A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press) (https://www.press.jhu.edu/books/title/11800/womans-guide-living-heart-disease)