by Carolyn Thomas ♥ @HeartSisters
Consider hearing the scary diagnosis of “heart failure” tripping lightly from your doctor’s lips as if it were no big deal. Can there be anything more terrifying and demoralizing than hearing that your heart is “failing”? And the words don’t even accurately reflect this condition, which actually means that your heart is not pumping blood as well as it should.
So why did doctors come up with this heart failure name, and what on earth were they thinking when they decided it would be a good idea to actually say these words out loud to Real Live Patients? And is there a less hurtful term they could use instead?
Using comparable terminology like “failing a treadmill stress test” or “abnormal electrocardiogram” or “sick sinus syndrome” are jarring when heard by the average freshly-diagnosed patient, according to the late cardiologist Dr. Bernard Lown, a Nobel Peace Prize recipient and author of The Lost Art of Healing.
Words like these, he says, likely reflect physicians’ use of common clinical jargon without any real awareness of the damaging impact on patients. In a paper called “Words That Harm, Words That Heal” published in The Archives of Internal Medicine(1), Dr. Lown and his colleagues explained:
“Consider the patient who has just had a heart attack: the first few hours of uncertainty in the coronary care unit are also an introduction to mortality, eliciting worry that every beep on the heart monitor might be the last.
“Then, at the height of the patient’s anxiety, the physician might come in and gravely announce:
“You have the type of lesion we call a widow maker!”
Those are precisely the same words I heard while recuperating from a heart attack in the CCU (the hospital’s intensive care unit for cardiac patients). In a more recent essay on (the enlightening and delightful blog that Dr. Lown used to write with his granddaughter, Melanie Lown), he explained further: (2)
“The doctor is part of our culture wherein doom forecasting is within the social marrow. Even the daily weather is often reported with anxiety-provoking rhetoric.
“To be heard, one learns the need to be strident, equally true for weather predictions as for medical prognostications. The end result is that doctors justify their ill-doing by their well-meaning.
“Unfortunately many doctors are poor communicators. It begins with medical school. The curriculum is weighted heavily with science while the art of medicine is given short shrift. As a result, medical students focus on the disease, rather than on the whole patient. Little time or effort is devoted to honing skills in interpersonal relations or cultivating the art of caring.
“The effect is that doctors don’t listen, trust is undermined, and patients are less likely to follow medical advice.
“Projecting a grim scenario also achieves the important objective of gaining the patient’s compliance without the need for reasoned and time-consuming explanations.
“In our health care system today there is constant pressure to minimize time with patients. The less time a doctor spends with a patient, the more profitable the encounter.
“Instilling anxiety makes for a customer ready to buy – namely, to undergo any test or procedure.”
But instilling anxiety may do far more than make a patient pay attention to what the doctor is saying. In fact, it can do just the opposite. It can also intensify the emotional distress that so often accompanies a heart disease diagnosis. At Mayo Clinic, for example, we learned that up to 65% of heart patients experience significant symptoms of depression, yet fewer than 10% are appropriately identified.
Dr. Lown believes that instilling anxiety by deliberately 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 his or her patient will comply with lifesaving recommendations. Even in non-emergency situations, the physician may believe that these words are actually necessary to persuade the patient to accomplish what needs to be done to maintain health.
The internist Dr. Eric Cassell coined this observation:“Sticks and stones may break your bones, but a word can kill you.”
As a heart attack survivor who has heard those exact words “widow maker” from a physician, I can tell you that whatever words follow those are likely completely lost in the roaring freight train rush going through the patient’s brain at that moment as we try vainly to figure out what the hell has just been said. And when frightening words finally do sink in, their effect is far more demoralizing than motivational.
Dr. Lown cites casual (or intentional) real-life physician statements like the following:
- “You have a time bomb in your chest”
- “The next heartbeat may be your last”
- “Your life is hanging by a thread”
- “There is no choice. We have to operate.”
He also describes how these common examples taken from the field of cardiology that illustrate well how words – perhaps spoken with the best of intentions – can cause what’s known as iatrogenic harm (which is defined as a new medical problem that occurs as a result of the actions of a medical provider). He adds:
“Unfortunately, medicine encourages ‘detached concern’ which devalues subjectivity, emotion, relationship, and solidarity.”
So what alternative words might physicians come up with to replace hurtful ones like “heart failure”? Dr. Lown suggests this:
“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.
“Perhaps a better term would be stiff muscle syndrome.”
Scottish physician Dr. Trish Elliott of Edinburgh has her own favourite substitute term instead of heart failure: “insuffisance cardiaque”, as she suggested on Twitter:
Cardiologist Dr. David Brown also suggested on Twitter this potential name to help explain the condition to patients:
The key concept is congestion to explain the symptoms of breathlessness and edema (swelling). Maybe congestive heart dysfunction?
* Words that harm, words that heal” Archives of Internal Medicine/Volume 164, July 12, 2004. Susanna E. Bedell, MD Thomas B. Graboys, MD Elizabeth Bedell, MA Bernard Lown, MD. 2004 Jul 12;164(13):1365-8.
** February 21, 2013: “The Roots of Medical Bullying” – The Lown Conversation
Q: Have you ever heard medical terminology from your doctor that you found hurtful or frightening?
Would you drive your car if its brakes were “failing”?
Is it finally time to change the name ‘heart FAILURE’?
Stupid things that doctors say to heart patients
Why aren’t more doctors like Dr. Bernard Lown?
Avoiding avoidable cardiac care
Just not listening – or “narrative incompetence”?
“She’s a fighter!” and other metaphors in medicine
Six rules for navigating your next doctor’s appointment
Why don’t patients listen to doctors’ heart-healthy advice?
How to communicate your heart symptoms to your doctor
Say what? Do patients really hear what doctors tell them?
23 thoughts on “When doctors use words that hurt”
Sometimes it’s just the jargon, and the manner. After an angiogram three years ago, when I was still in the room where the procedure was done, and I was half awake, the cardiologist who did the procedure, who I met just before the procedure, told me I had pristine arteries (we were checking for a blockage) but I had cardiomyopathy.
And then he left the room.
I had never heard of this, and the poor nursing staff were left to deal with me.
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Irene, that cardiologist is a jerk. That’s just a plain ol’ lack of basic human courtesy.
As someone who works with words every day, I always find these discussions fascinating. And yes, you are 100 percent right. Words do make a difference in how they unconsciously shape and reflect our perceptions and biases.
The patient “did not tolerate” a certain test or treatment, for example. What does that mean? Or “incompetent cervix”? It’s common in oncology to say the patient “failed treatment” when a particular cancer treatment doesn’t work. So judgmental, yet its use remains widespread.
One of my personal favorites was the young 30-something primary care doctor who told me right after cancer treatment that “we’ll just treat you like you have a long life ahead of you.” (pretty much an exact quote, and at the time I actually was only a few years older than he was.)
I have a really thick hide so I just shrugged it off… but, sheesh.
‘Sheesh’ is right, Anne! I’m hoping that it was your doc’s young age and the profound ignorance of youth that made him say such a stupid comment out loud. No doubt, he meant it as reassuring . . .
Thank you again, Carolyn, for sharing my grandfather’s wisdom. You are doing so much to help patients AND doctors mend a broken relationship and restore “the lost art of healing” to medicine.
Thanks so much for your kind words, Melanie. I so admire your grandfather’s work, and all that you both are doing to remind modern doctors that there’s a better way. Keep up the great job on the always-inspiring Lown Conversation!
Hell yes I’ve been told stuff like you have a slight aortic aneurysm, but with you keeping your blood pressure under control and having your cholesterol low you could last another ten years or so………… REALLY how comforting my main artery is going to explode sometime in the next ten years.
Nobody told me this before and quite frankly I wish they hadn’t told me now, because that is all I think about. I’m a worrier any way and this has moved me up to the championship class of worriers.
Hi Julia – boy, that’s the kind of championship you just don’t want to win, right? I cringe when I hear docs throwing around numbers like years you have left. They may be assuming that saying this motivates patients to do what they can to remain healthy/prevent recurrence, without realizing the psychosocial impact of living with what can feel like a time bomb within.
Meanwhile, none of us knows how many precious hours we have left on this earth. Could get hit by that Big Bus tomorrow. So try to just b-r-e-a-t-h-e and take one day at a time – for however long you’ve got!
I was in a tweet chat #hcsm last night and suggested that one reason doctors don’t want patients to have access to medical records is that they would have to clean up comments like “somewhat obese” for example. I know charts often contain this type of language
Imagine my surprise when the answer I got back from one of the participants was this:
“Might be good wake up call for patient” RT
I will leave my personal feelings to your imagination. (His avatar wears a cowboy hat)
Hmmm… maybe that’s why my doctor’s notes always refer to me as “pleasant”. ‘Somewhat obese’ is just doctor-speak for BMI ratings which are pretty clearcut. Since any BMI over 30 is ranked as obese, it’s not a value judgement, just the BMI chart speaking. But docs could simply enter BMI 32 and they wouldn’t have to use the word obese at all.
I am still reverberating from this post. In my specialty there are many hurtful words and phrases such as “inadequate pelvis”, “habitual aborter” and others.
In the U.S. the major examination used for admission to medical school is the MCAT. I lived through the transition from an MCAT that included basic knowledge and an essay to a totally technology and science focused content. I believe that that small change in selection process has contributed hugely to creating physicians who lack empathy and utilize what I call technocentric care: in a laboring woman’s room all eyes are on the fetal monitor instead of on the woman who is working to bring forth her child.
What doctors say is powerful, and we need to remember that. I can remember being told that one of my medical problems was because I was “old and fat”. I remember lying in physical and emotional agony after major surgery and having the doctor say “oh well, we’ll pull a few of your tubes out and you’ll feel better” then walking out of the room.
This is so complex, I need more time to think about it. How do we teach doctors to be compassionate healers in an environment that is built around numbers and machines?
Thank you for being so thought provoking.
Rock on, heart sister.
Oh, Anne. No wonder you’re reverberating! “Inadequate pelvis?” and “habitual aborter?” – it’s hard not to take those kinds of labels personally if you’re the patient hearing them.
I continue to be surprised by how casually (some less charitable might call it flippantly) doctors toss off words and phrases to their patients as if they genuinely have no clue how it might feel to actually be on the receiving end.
After you’ve had more time, come back and please share what if any suggestions for improving your profession’s status quo that you might have, okay?
Thanks as always for your comments.
PS love the picture!
I think that every medical student should have to spend a whole module on “bedside manner” …. also looking at their patients holistically and think about what the mental impact may be of certain diagnosis.
In Australia we now have far more psychological help for cancer patients and it is making a huge difference in how people cope. I was told by my cancer specialist when I asked about having Lymph nodes removed that it was.. ” better than being dead!!!”
That phrase has never left my head!!!!
Hello Helen and thanks for your perspective. You bring up an excellent point about med school, for that’s where this starts (or rather, that’s where the importance of being sensitive to what it’s like to be a Real Live Patient is not being pummelled into all students!)
“Better than being dead!?” Yikes. That’s his idea of an appropriate response to an overwhelmed patient?!?! (So is having your fingernails ripped out, I guess …)
In retrospect my question to him was of value given my ongoing problems… I was right, I did need my lymph nodes…. This highlights the issues with doctors in that they just focus on what they need to do to achieve results and have little regard for side effects!! They forget that inside their patient is in turmoil…. Helen
OF COURSE your question was of value! Every question that a patient asks of every physician is valuable – even if the doc’s associated answer seems not to respect that reality. Hence the importance of warnings about words from Dr. Lown in this article.
Helensamia – I think the med students should have to spend time with those of us who have had a heart attack, etc. and let us fill them in on how to speak to a person who is already scared to death.
I love my doctor but while performing the heart cath, he stopped, walked over beside me and said, “you have had a heart attack” and walked back to continue what he was doing. No more was said until I brought it up the next day. I laid in bed all night wide awake just knowing I was going to be dead within 24 hours.
Well 2 years later I’m still kicking but I really would have liked an explanation on the spot, not the next day.
My diagnosis: that doctor was an idiot. More (truly incredible) examples here at “Stupid Things Doctors Say to Heart Patients”.
Thanks for sharing that, Sandy – my blood pressure just spiked…
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Unlike other hospitals, my heart hospital has a rule about never saying that a patient has heart failure. My cardiologist met me for the first time in the ER when they were trying to determine just how bad of a heart attack I was having.
My doctor was very comforting and understanding about what I was going through as a patient. I still remember because he would keep looking away from my eyes as if it was his fault that he couldn’t fix it. He started by saying I had a very very tiny heart and that my heart attack was massive and there was so much damage and he had done everything that could be done. He said he wanted me to rest and let the nurses take care of me.
I didn’t find out that I had congestive heart failure until three days of being in the hospital and walking around. The doors to the different areas were closed and I looked back at the door to see where I was and got the shock of my life to find I was in a heart failure unit. They had to send for my doctor because I wanted to be moved, that was when I found out.
Hello Robin – my suggestion would be that the sign on that door needs to be changed. And that all hospital staff need to re-assess the language they use every day in talking about diagnoses to patients who are at a heightened state of confusion and anxiety. This isn’t about lying to or sugarcoating reality for patients, but it is about adapting the language so as to ‘do no harm’.
Yes, words count. There’s a commercial that is on TV right now (insurance? some preventative thing we’re supposed to buy?), where the father shakes his head, ruefully laughing, and says of his teenage daughter, “She’s still gonna give me a heart attack!”
God help the poor daughter if he does have a heart attack, and those words sink into her viewpoint of cause and effect. What a legacy of guilt one would undeservedly carry, when in fact it had much to do with his genetics, diet, exercise and many other factors. That commercial makes me cringe!
Haven’t seen that one, Mary but you raise such a good point. How about others like “You’ll be the death of me!” ?