What Should We Call It?

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.