*Editor’s Note: This interview has been edited for length and clarity.
As the numbers of people infected and dying from COVID-19 grow, so do fear and apprehension about what lies ahead. Clear, effective communication to help patients navigate this unknown territory is critical. Dr. Alexander Chiu, ENTtoday’s physician editor, recently highlighted this in a commentary published on March 13 in which he wrote, “Talking to our patients in a language they can understand is fundamental to our job.”
To guide clinicians, we turned to a risk communication expert with years of experience helping people during times of crisis. Peter Sandman, PhD, urged officials early in the COVID-19 outbreak that they needed to tell the general public to start preparing for a pandemic.
Dr. Sandman stressed that candor is more comforting than reassurance, and that it’s important to help people find ways to feel in control.
ENTtoday: How can otolaryngologists talk to patients who contact them needing care, and explain things like the differences between what is an emergency, an urgent need, or an elective need?
Dr. Sandman: I think patients mostly understand already that this is an upside-down time when all sorts of plans are being changed and norms are being violated. If they’re seeking treatment anyway, maybe they think it’s essential. Maybe they’re thinking only about themselves, trying to get a little control over something while so much of their lives is now beyond their control. Maybe they figure there’s no harm in asking, and they’re already prepared to be turned down.
I would start by asking, “Do you want to move forward and you hope I’m willing? Or do you want to postpone and you hope I think that’s safe? Or are you undecided and looking for more information to figure out what you want? Or is this a decision you want to leave entirely in my hands?” The rest of the conversation should depend on the answer to that question.
Early on, it might help to articulate some things you can be pretty sure patients are feeling. “What an awful time this is! What an additional burden it must be to be facing a medical procedure that might be scary even in normal times, and now it’s much scarier—scary to think about how dangerous it might be to have the procedure done right now, scary to think about how dangerous it might be to postpone the procedure till the pandemic is over.”
Displace these observations to make them less accusatory. Not, “You must be scared….” Maybe, “A lot of our patients are telling us they’re scared…,” or even, “If I had a pending procedure, I think I’d probably be scared….”
Frame the decision as a collaboration. The patient has information you don’t have—how much it hurts, for example, and how badly he or she wants the procedure over. You have crucial information too, of course. It takes two yeses to go forward—the patient has to decide that it’s wise to come in for treatment in the middle of a pandemic, and you have to decide that it’s wise to provide the treatment in the middle of a pandemic. The purpose of the conversation is to help you both make the right decision.
Don’t use overconfident words like “ensure.” This is all about risk-risk tradeoffs—the risk of going ahead versus the risk of postponing. There’s no good answer, just less bad ones. Now is not a time when we can “ensure” much of anything. We’re all just doing our best. Similarly, try not to say you’re “sure” the procedure will be safe (if you’re recommending going ahead) or “sure” waiting will be safe (if you’re recommending postponement). If you think it’s a borderline judgment call, say so. If you think one choice is obviously preferable to the other, say that—but you’re still not “sure.”
If you want to move forward with the procedure, you will be tempted to understate the risk to the patient of moving forward. Try not to do that. Traveling to your office is itself a risk; the possibility that somebody in your office is infected and could transmit the infection is a risk; others in the waiting room are a risk; every object (from medical equipment to doorknobs) is a risk. Of course, you should explain—but not oversell—what precautions you are taking to reduce these risks.
If you want to postpone the procedure, you will have the opposite temptation. Don’t give in to that one either. In particular, don’t overemphasize the risk to the patient if your main reason for postponing is the risk from the patient—the risk to you and your staff of performing aerosolizing procedures on a patient who might be infected, perhaps with a shortage of masks, gowns, and other PPE.
Consider specifying how long a postponement you’re talking about, or be candid that you can’t because it’s so hard to know what conditions will be like, or when the government’s lockdown rules may change. But do your best to offer something like a plan. “When X and Y are happening here in our community, I’ll be ready to resume doing procedures like yours.” Or, “Your procedure really shouldn’t wait longer than three months. Let’s talk again in six weeks and see whether we think it makes sense to get it onto the schedule.”
ENTtoday: How can you calm patients who may be in pain?
Dr. Sandman: Figure out—or ask—what the patient in pain wants from you. Does he or she want help—e.g. pain meds? Does he or she want advice, such as what the patient can do at home to reduce the pain? Does he or she want a chance to vent?
Most healthcare professionals know already that they should never tell patients that it doesn’t hurt as much as they say it does. Or that other patients have it worse. Or that you’re sure they’ll feel better if…. Instead, let them tell you how bad it is. Agree with them that it’s awful, unfair, etc. You might want to point out that some people feel better focusing on their pain, complaining about it, while other people would rather be distracted and think about something else—and then ask them which group they’re in. But even people in the second group may be temporarily in the first group when they’re talking to their doctor or doctor’s office!
ENTtoday: How do you explain to patients what the new coronavirus is?
Dr. Sandman: Consider giving them links to sites you consider reliable instead of second-hand information you got from those links. But if they’re not equipped to navigate the internet or they’d really rather hear it from you—and you feel qualified to brief them (and have the time), by all means give it a shot.
Talking to your patients about medical science is a bit like talking to your children about sex: It’s best not to tell them more than they want to know. Let them guide the discussion. Answer their questions. And if you sense an unasked question, if they’re talking around what you suspect they really want to know, answer the unasked question too.
There may be some information you need them to have, and you should try to provide that information whether they’re asking for it or not. For example, you need them to know under what conditions they should seek COVID-19 medical care, which is basically, if they’re having trouble breathing. And you need them to know whether their ENT problem affects their COVID-19 vulnerability in any way. Second, there may be some misinformation you need to correct—something they think they know already but they have it wrong. I see no need to correct misinformation that isn’t actionable. If a patient thinks the virus is DNA and you know it’s RNA, so what. But if it matters to their health—for example, if they wrongly think they can safely spend time with other people as long as they wear a mask—then you should speak up.
There’s at least one topic of widespread public interest that overlaps the expertise of otolaryngologists: the finding that COVID-19 can cause infected people to have a lost or distorted sense of smell or taste. Be prepared to tell patients what you know about this.
ENTtoday: What specific jargon would you suggest avoiding?
Dr. Sandman: I don’t have a specific list of COVID-19 jargon to use or avoid. But don’t let language distance you from your audience. Unless you have an extremely good reason not to do so, call things what your patients call them. If they say germ, you say germ.
The rule of thumb for teaching people jargon is to use the concept first, explaining it in plain language; then, once they understand it, tell them what it’s called—not the other way around. But a more important rule of thumb for teaching people jargon is this: Ask yourself whether you’re trying to enlighten them or impress them. Some patients may want to learn all about flattening the curve and R0 and the distinction between signs and symptoms. Most probably don’t.
About the only piece of jargon I think patients may really need to learn is “social distancing.” And that’s a toughie, because it means everything from not shaking hands to not leaving your home. Still, the basic concept is critical to everything right now, including decisions about whether to postpone ENT procedures. In a nutshell, the main way people catch COVID-19 is by being close to someone who’s infected, close enough that the virus passes from them to you, usually because they coughed, sneezed, talked, or breathed in your face. A secondary pathway is touching something they touched, then touching your own face. Staying home is maximum social distancing. Staying six feet away from other people is partway social distancing. And having an ENT doctor work on you is the diametric opposite of social distancing, something you would do right now only if you had a very good reason not to postpone it.
—Mary Beth Nierengarten