What should we call it?

Nov 01 2010 Published by under Medicine

Many years ago I was a kid on a wilderness canoe trip, on a beautiful isolated lake in northern Ontario.  We stopped for lunch in the early afternoon and stripped down to wash up in the cold water.  One kid dove in, and when he emerged, there was blood pouring down his face.  He said, "I think I may have hit my head."

When he climbed out, we gathered around and the trip leader pulled the thick, sticky dark hair aside to look at the wound; under the hair and pooling blood was something that looked a lot like skull.  The leader and one of the counselors jumped into a canoe and took off to a wilderness resort several miles away to get help.  For hours, we kept him distracted, making jokes and downplaying the potential severity of the horrid-looking wound on his head.  After the bleeding stopped, things seemed almost normal, but the hours passed, and still we sat on the rocks, not knowing how severe an injury our friend had.

Finally, a little before dark, a yellow sea plane circled over the campsite and landed just off-shore.  We put the injured kid in a canoe and paddled him out to the plane.  As we approached, the ranger called out, "Are you the one with the severe head wound that's bleeding profusely?"

"My God, I hope not!" he shouted back, his expression transforming from tired amusement to fear.

Health journalist Mary Knudson is passionate about heart failure, and with good reason.  A few years back, she was told that a large part of her heart had died, and during the work-up of her heart failure, she did in fact die briefly, but was revived by "direct current cardioversion" (which is a nice way of saying that several hundred joules of electricity were applied repeatedly to her chest wall, convincing her heart to resume beating properly).  Mary used her skills as a health journalist to learn more about the disease that nearly killed her, and she recovered quite well.  Her experiences have given her an interesting perspective on health and disease, one that we physicians can learn from.

Patients and doctors have a lot to learn about how each group views disease, even down to the basic level of naming.  Many disease names are historical artifacts: many were named before a disease's cause was known, many are named after people who first described them, and many are imprecisely named after a basic fact of the disease.  "Down's Syndrome" endures despite our knowledge of its exact cause, a cause apparent in its more modern name "Trisomy 21" (the older name is a Victorian horror, "Mongoloid Idiocy").   Trisomy 21 immediately tells a medical professional that the patient has a specific genetic defect, one that is associated with a typical set of physical features and health problems.  But many diseases are not easily named by a cause, and many others are syndromic, meaning they are not so much as disease as a collection of symptoms and findings that seem to hang together but have no clear cause.  There has been a (gentle, quiet) push in medicine to rename diseases to reflect more accurately what we know about them, but there are many barriers to this.

Until I'd read Mary's blog, I hadn't thought about the nomenclature of heart failure all that much, perhaps because I'm not a heart failure specialist, or more likely, because I'm not a patient.  Heart failure is a fascinating syndrome, one which Mary points out is  somewhat deceptively named.  The name is an old one, one that originated at a time when the heart was seen as little more than a pump.  What the name really refers to is a constellation of signs and symptoms attributable to a heart muscle that isn't functioning well enough to meet the body's needs.  It can range from completely asymptomatic to crippling to mortal.  But as physicians, we generally understand what the term means, how to classify it more precisely, and how to treat it.  The name seems to work well enough.

As physicians, we sometimes forget the impact our words have on patients.  It sometimes seems as if the things we say to patients go in one ear and come out the other, but that's an error based on our point of view.  I may tell a patient to quit smoking, but their failure to quit is not a failure to hear me.  I may tell a patient they have cancer and wonder how they can later say I never told them.  It's hard to gauge how a patient will respond to a particular set of words.  To some "diabetes" terrifies them to the point of paralysis.  Others may simply say, "OK, so what do I do about it, Doc?"  The "C"-word tends to be particularly powerful, and I've found that little you say after "cancer" gets through.

"Heart failure" is a pretty scary string of syllables, too.  Here's what Mary has to say:

Heart failure is an appropriate name for patients who are now said to be in “end-stage heart failure” in which they have only months or less to live unless they get mechanical aid to take over part or all of their heart function as in a ventricular assist device (VAD) or get a heart transplant.  But I submit that this is the only true heart failure. Just drop the first two words, because “end stage heart failure” is redundant.

Heart failure is not an appropriate diagnosis for people who have no symptoms or who have symptoms that can be improved or even disappear under treatment.

Why does it matter what conditions are called heart failure?  Why does it matter how many people hear their diagnosis is heart failure?  Shouldn’t I just leave the naming of medical conditions and diseases to doctors and mind my own business?  What’s in a name?

[...]

Never having had any known heart problem, I sat in shock when a cardiologist told me in 2003 that I had HEART FAILURE.  When a doctor tells you that, it’s like being told you have end-stage cancer. You know nothing about heart failure, probably have never heard of it, and it sounds quite fatal.  I went home and made out a will, then spent several months educating myself about heart failure and going from doctor to doctor, searching for the right treatment, afraid that I could drop dead at any moment.

The problem of nomenclature is one of the doctor-patient relationship rather than the name itself.   Medicine is full of complicated concepts delivered to people often when they are at their most vulnerable, and are least able to assimilate new ideas.  How are we to pick disease names to achieve the correct emotional pitch?  There really isn't a way.  Notice how Mary compares heart failure to cancer---cancer is just a word, one without any specific prognostic meaning and yet it can be paralyzing.  The problem here is not in the name, but in the communication.

It's easy enough for me to say, "it's just words," and Mary's closing words show that she understands the root of the problem:

...I hope that, when pronouncing the scary words “heart failure” to a new patient, doctors will take the time to explain that, much of the time, it’s not what it sounds like.

This is the heart of the matter. Heart failure is, from a medical standpoint, reasonably useful as names go.  As doctors, we have to allow our patients to remind us that words have a different and important set of meanings to them and that a failure to understand this magnifies our patients' fears.

11 responses so far

  • Mary Knudson says:

    A very thoughtful post. Thanks for writing it. One of the very nice aspects of blogging is that we exchange ideas and talk back and forth.

    I agree with you that the doctor-patient relationship is very important and that what the doctor says and how he/she explains a diagnosis to the individual patient grows out of that relationship which should be built on respect and trust and honesty. And caring. And a knowledge of what words mean.

    However, no matter what gets said at the doctor's office or patient's bedside, the patient then goes home and tells family and friends and employer what the diagnosis is and they all hear "heart failure" and they read about it on the internet and find outdated death statistics. And the patient reads more about the diagnosis of heart failure on the internet and finds very scary things.

    So I don't think the only answer is how well the doctor explains heart failure as a diagnosis. In fact, heart failure as it now stands covers so much that it is hard to explain. But using the right qualifiers and explaining what modern treatments can do is certainly a necessary responsibility when the diagnosis is given.

    Thanks again for writing your thoughts about this.

    Mary

  • ginger says:

    Ohhh, man, I took care of a patient, long ago (must have been in nursing school) who was in the middle of a congestive heart failure exacerbation and I thought that his anxiety was going to kill both of us. He was hypertensive and more than a little hypoxic, so he was having no little trouble using his capacity to reason to offset his fear. But I worked on helping him relax, and repeatedly juuuust got his vitals down and his sats up a little bit, and then along would come another student or doc to poke him and ask about his HEART FAILURE, and off we went to the races again.

    He knew he had a "heart condition", but I think that he hadn't been exposed much to the phrase, just the acronym. He really didn't understand, either, why he was having such trouble breathing if it was his heart FAILING (which would have presented a great teaching opportunity if only he hadn't been completely wild-eyed with terror).

    So, yeah - made a helluvan impression, how scary those words were and the direct physiologic impact they had.

  • Mary Knudson says:

    Patients can have very bad symptoms and then appropriate medicines can relieve the symptoms and they feel much better and can go on with their lives. I, of course, don't know whether the patient Ginger refers to was in true end-stage heart failure, which I agree is heart failure, or if he had just eaten too much of a salty diet that brought him to the hospital with fluid congestion. And maybe he wasn't taking his medications regularly. It is so important to take the right medicines faithfully every day and avoid salty foods.

    To clarify about my experience, I was told that part of my heart muscle was dead, but the doctor misread the echocardiogram and after the angiogram showed that none of my coronary arteries were blocked, he told me I could not possibly have had a heart attack and so none of my heart was dead. I did temporarily die on the exam table during the angiogram but that was not my heart giving out. I was allergic to the dye used in the procedure. So it wasn't the condition "heart failure" that nearly killed me. It was my first doctors who didn't put me on the right medicines and gave me the unnecessary angiogram. I found the right treatment and I recovered from the diagnosis heart failure.

    I very much appreciate PalMD's thoughtfulness in writing this post. He and I agree that the words doctors use in discussing a patient's situation are very important. Ginger's case bears that out, too.

    I suggest that this is not just a matter of avoiding using a legitimate phrase in front of a patient, but moreso that most people told they have heart failure really don't and so doctors are using frightening words that are unnecessary. I hope there is more dialogue with doctors and other caregivers and people told they have heart failure.

    Thanks for kicking this off!

    Mary

  • D. C. Sessions says:

    In a way I'm at the other end of the spectrum: I'm a nonurban first responder, and I see far too many patients with potentially serious conditions who don't understand the risks involved. It's hard to get across the idea that they might be in trouble and should get immediate definitive care rather than waiting to make an appointment with their PCP the following week.

    Having to pile on qualifiers to make sure they understand that I'm not diagnosing their upper arm which has developed a new joint between the shoulder and elbow as a "fracture" [1] doesn't help, of course.

    [1] "Broken arm" is a diagnosis, which is practicing medicine. We don't dare use the term, so anything we say has to include more weasel words than substance.

  • jtradke says:

    This reminds me of the bemusement I experienced when my mom (a nurse) told me that my dad had "some heart failure". SOME heart failure? WHY ARE YOU SO CALM ABOUT THIS?!

  • Dianne says:

    So, heart failure isn't really the best name for it: too scary and not accurate enough. It's more of heart insufficiency than actual failure. However, how do we rename it without making the new name sound like some sort of Orwellian attempt to hide the truth?

  • Vicki says:

    For me, "s/he has a heart problem" or "has some heart trouble" is much less scary than "s/he has congestive heart failure." "Trouble" sounds like something that can be fixed or dealt with, and "failure" doesn't.

    Would "a heart problem" feel like weasel-wording?

    • Dianne says:

      It's too non-specific. There are lots of heart problems. Maybe it would be useful to start out talking about how the patient had heart problems and describe the implications and treatments before giving the frightening sounding name?

  • PalMD says:

    To me it would, as heart failure is always serious, but to different degrees.

  • daedalus2u says:

    How about not enough nitric oxide in the heart? Every type of heart failure ends up with not enough nitric oxide. ;)

  • Alex Besogonov says:

    Hah. Interesting post.

    The Russian term for 'heart failure' can be translated as 'heart insufficiency'. Which is a bit closer to truth but leads to exactly the opposite reaction - people downplay it.