I can’t tell you the number of people who complain to me about having their hope taken away. Exactly what this means, though, isn’t always clear.
Sometimes an oncologist will tell them (so they say) that they have a month to live. Sometimes their cardiologist tells them (so they say) not to travel to their grandson’s Bar Mitzvah. Sometimes the spine surgeon tells them their back will always hurt, no matter what. So they say.
Patients tell me a lot of things. I’m not always sure what other doctors really told them, but what is important is what the patient heard. The oncologist might have said “incurable” but followed it up by “but treatable for years.” I suspect after hearing “incurable”, not much else gets in.
One thing I’ve finally learned after a number of years is that patients actually listen, even if you don’t think they do. What they hear is a different story. Depending on their mood and circumstance, they may hang on single phrases, subtle inflection, the way your eyes dart.
To be an effective physician, you must also be an actor of sorts; not in the sense of pretense, but in the way you pay attention to everything your words and body do, and how your audience reacts.
I had a patient a few years back, a very pleasant older woman, who came to me with difficulty in swallowing. There can be a number of different reasons for this. A radiographic study, however, showed a lesion in her esophagus that was almost certainly cancer. Normally, I won’t speak on the phone to people about such things, but she and I had decided for various reasons that this would be the best way to communicate. I told her about the results:
“There is something blocking your esophagus. This is why you’re having trouble swallowing.”
“What do you mean, “something”?
“Well, lots of things can cause this, for example, bad acid reflux. But cancer is on the list, and we have to figure that out right away, so that if it’s cancer, you can get the best treatment possible.” In my mind, cancer was really the only possibility here.
There is something about the “C”-word. Despite the fact that it refers to hundreds of different diseases, some of them not particularly bad, it stops people in their tracks. Often, once you say it, everything else is noise. That’s why it’s important to have a plan. When a patient hears the C-word, the instructions you give them afterwards are often missed. In this case, I had already called one of my GI colleagues and gotten the ball rolling.
“I have a phone number and name for you. Do you have a pen?”
“Um, no, hold on.”
“Call Dr. GI at this number and tell him I already spoke to him about you. He’ll know, and he’ll get things rolling. OK?”
“Your welcome. Call me if there are any problems.”
I received a call from the GI doctor later in the week. He biopsied the lesion. It was all narrowing caused by reflux. No cancer at all.
Nothing is really hopeless, but defining “hope” is very important. Pain is of course a common complaint in the doctor’s office. Pain is not easily measured. I can’t X-ray it, I can’t palpate it. Also, I can’t always make it go away.
It is important to set proper expectations. If a patient sees me about chronic pain, and they’ve been to a horde of specialists and subspecialists without much releif, chances are good I’m not going to cure them. That doesn’t mean I can’t help them, and give them some hope. I usually tell them quite frankly that I don’t know how good a job I’m going to do, but that I’m going to try very hard. I beg their patience in the face of great pain, and in return promise to do my best. But I make clear that my goals are modest: I will try to make the pain more endurable, less intense, less of a constant focus, but I probably won’t make it go away. Early honesty pays back with interest.
And back to cancer. With cancer, we have statistics. We know, for instance, that of “x” number of people with a particular disease, “y” will be alive 5 years from now. But we can’t always tell whether a particular patient will be one of the “y” number of people alive, or in the group of those who died. That is one of the reasons nihilism isn’t useful.
As a resident I admitted a young woman to the hospital. Her primary care doctor had discovered a large mass in her brain, and asked us to find the cause. After working her up, we found a primary lung cancer. 5-year survival for this type of cancer at this stage is less than 3%, meaning of 100 patients similar to her, only 3 would be expected to be alive in five years. As it turned out, she was one of the three, and in that time, she accomplished some marvelous things.
Hope. Had we taken it away, things might have been different. That doesn’t mean lying—she knew the statistics, planned for the worst, but had hope she would be one of the three, and fought hard to get there.
Hope is one of the intangibles that physicians can offer patients. Yes, it must always be colored by realism; finding that balance is a never-ending struggle. But it’s worth the fight.