When McMaster University cardiologist Dr. Harriette Van Spall asked her Twitter followers recently to offer topic suggestions for the upcoming Heart Failure Summit, I responded with a suggestion of my own:
“Please please please can we STOP calling this condition heart FAILURE?” .
The reasons behind my plea are the same ones that I’ve been writing and speaking about for years. I’ve listed them most recently in my post called “Would You Drive Your Car If Its Brakes Were ‘Failing’?“
Dr. Van Spall replied to my suggestion right away:
“Long-standing debate – I hear you! While I don’t anticipate that we will change the nomenclature, the theme of the meeting is intended to provide hope and tackle the root causes of heart failure (as much as discuss evidence-informed treatments).”
But 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”.
There is nothing hopeful about that.
I often hear from my readers who have sat through that conversation with their cardiologist. Those who have heard this diagnosis firsthand almost always compare that frightening moment to a “death sentence”.
Here’s a fairly typical comment, 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.”
This is an important patient narrative. I’ve observed that many physicians still insist that they are somehow able to minimize the traumatizing effect of hearing the words heart failure by immediately reassuring the patient that the name doesn’t really mean that the heart is failing.
That’s quite simply a preposterous interpretation. Failure means failure. Full stop. If it doesn’t mean it, then stop saying it.
This of course begs the question: if you must use a name that requires an immediate disclaimer to reassure us that words don’t actually mean what we think they mean, isn’t it time to let go of that name?
It turns out that throughout the history of medicine, many other conditions have started off with a name which was later changed to something more appropriate.
Until 1982, HIV/Aids 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 young, 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 as Wuhan SARS or Wu Flu (named after the city in China where it was first documented last year). But the World Health Organization (WHO) discourages the use of geography in the naming of diseases (because of the significant stigma such names bring) so last month, WHO renamed the disease corona virus disease 2019 (COVID-19)
Here’s how Dr. Lown described this cardiac condition:
“ Heart failure is not a disease. It’s just a description of clinical syndromes. A heart failure prognosis is no longer what it used to be; much of the damage that occurs to the heart may be reversible, and the symptoms controlled over decades.”
So the name heart failure does not accurately reflect the current definition of this condition: essentially, when your heart is not pumping blood as well as it should.
Cardiologist Dr. Lynne Warner Stevenson, a professor of medicine at Harvard University, wants to see the end of 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 intensify the severe emotional distress that can so often accompany this 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 heart failure.
And no wonder these people are depressed! They have just been told their hearts are failing.
This depression-associated reality is important. We know that patients struggling with depression are far less likely to take their prescribed meds, exercise, improve their diet, show up for medical appointments and cardiac rehabilitation classes, quit smoking, lose weight, or be able to manage their considerable chronic stress.
Ironically, that list of instructions is precisely what the same physician who first drops the diagnostic “heart failure” bomb upon them will likely be recommending in the very next breath.
Just because a medical condition has had its name for a long time, doesn’t mean that’s an excuse to keep it if it no longer fits, or – as in the case of heart failure – if it hurts people.
What’s a potential alternative name?
Dr. Stevenson prefers renaming this condition cardiac insufficiency, heart dysfunction, or cardiomyopathy. Dr. Lown favours calling it stiff muscle syndrome. Cardiologist Dr. David L. Brown in St. Louis explains the condition to his patients as congestive heart dysfunction. Scottish physician Dr. Trisha Elliott in Edinburgh has her own favourite French substitute: “insuffisance cardiaque”.
Personally, I don’t care what the new name will be, as long as it’s no longer called FAILURE.
I urge those attending the Heart Failure Summit – and every other cardiologist everywhere who is treating patients with this diagnosis – to take a leadership role now in making this brave change.
Please, let’s put a collective stop to using words that hurt patients.
Name tag image: Settergren, 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 many types of heart disease 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).