Yes, you're right, this is scary

August 6, 2018

My patients are afraid. Very afraid. They’re afraid of being in pain. They’re afraid of suffering. They’re afraid of losing their dignity and of being dependent on others. More than anything, they’re afraid of dying.

I’m a palliative-care physician; I take care of patients who are struggling with chronic, serious illnesses like cancer, heart failure, emphysema, and dementia. Most of them are afraid of what’s going to happen to them as their disease gets worse. And they’re all afraid of the future.

It’s taken me most of my career to learn this simple lesson: They should be.

The serious illnesses that they’re facing are scary. They rob people of their dignity, and they cause symptoms and suffering. And—all too often—they end in death. So my patients are right to be scared. Fear is a logical, rational, sensible response to what they’re facing. But it took me far too long to figure that out.

Early in my career, when I was a young doctor right out of fellowship, I hadn’t learned that lesson yet. When one of my patients confided that she was scared, I offered whatever reassurance I could.

You’re afraid of being in pain? Don’t worry, we have medications that can manage pain, most of the time.

You’re afraid of ending up in a nursing home? Don’t worry, I’m sure your daughter will step in to take care of you.

You’re afraid of dying? Don’t worry, there are still other treatments we can try.

In my defense, those awkward attempts to reassure were well-intentioned. I really wanted my patients to feel better. And I was convinced at some level that if they felt better, they’d do better. But those empty phrases didn’t help. Downplaying those fears, or postponing them, didn’t make my patients feel any better. In fact, I’m pretty sure that my approach—don’t worry—made many of my patients more afraid.

Telling them not to be afraid not only doesn’t help; it gives a not-so-subtle message that their fears aren’t rational. That’s the last thing I wanted to do, but it’s probably what I did without knowing it. I’ve learned, though. I saw that those reassurances didn’t help. My patients weren’t more comfortable, or less afraid, when I walked out of their hospital rooms.

Now, when one of my patients tells me she’s afraid—of pain, of suffering, of being dependent, of dying—I tell her that she’s right to be afraid. at most people in her predicament would be afraid. That I would be afraid if I were her. And that being afraid is natural and rational.

Then I ask her what she’s afraid of. Is it pain, or having to be dependent on opioids? Is it a loss of independence, or being a burden on her family? Is it a fear of dying, or a fear of dying suddenly, without a chance to say goodbye? I ask, but I don’t say much. I don’t offer hearty words of encouragement, and I don’t casually dismiss whatever she’s feeling. I listen.

Then, once my patient knows that I respect what she’s feeling, and once she knows I understand exactly what’s making her most afraid, I offer whatever reassurance I can, with as much detail as she wants. And I leave the door open to come back and revisit those fears—and others—whenever she wants.

Finally, I offer patients the most valuable reassurance I can. That isn’t a promise that they won’t have pain, or that they won’t experience suffering, or that they won’t die. It’s a promise that I and others will be there, and that we’ll listen to her fears, and we’ll take those fears seriously, and that we’ll overcome them together.

Casarett is professor of medicine and chief of palliative care at Duke Health. In addition to more than 100 professional-journal articles, he has written for Salon, Esquire, Discover, Newsweek, The New York Times, and Wired. He is also the author of three nonfiction books, most recently, Stoned: A Doctor’s Case for Medical Marijuana (Penguin Random House).