Most people rank losing their vision as one of their greatest fears, so finding out that you have glaucoma—an incurable and poten-tially blinding disease—is enough to give anyone pause. When a glaucoma patient comes to your office, he’s not worrying about pain, or even high pressure. He’s there because he’s afraid of going blind. It’s a fear-based situation.
Those of us who treat glaucoma are faced with challenges as well; given the current state of our knowledge, the best we can hope for is keeping the disease under control and preventing further damage, and there’s no guarantee that we’ll succeed with any given patient. So it’s not surprising that most of us focus on the signs and symptoms of the disease, monitoring progression and doing our best to detect it at the earliest possible moment. In the midst of all that, a patient’s fear is not usually our main concern. But it is a significant part of the equation; if it gets out of hand, it can undermine compliance and the doctor-patient relationship—and leave you with a very unhappy patient. On the other hand, hope is powerful medicine. It improves adherence to therapy and leads to happier patients and better outcomes.
Although most of us don’t think about it a lot of the time, what we say to our patients—and how we say it—has a huge impact on whether our patients become hopeful, or fearful and depressed. Here, I’d like to offer some suggestions for using “verbal therapy” to keep your glaucoma pa-tients positive and hopeful, as well as happy with your efforts in their behalf.
Note: I want to acknowledge the critical contributions of my wife, Mary Lynch, MD, who also is a glaucoma specialist. We both feel strongly about these issues, and it’s hard to say where her ideas stop and mine begin.
An Easy Mistake to Make
It’s not hard to unintentionally inspire fear or hopelessness in a patient. Most of us received little or no training in communication skills during residency, and the impact of a fear-inspiring comment may not be immediately obvious. Our own fears and concerns may color our choice of words without our realizing it. And, we don’t get much feedback about this from patients or staff, so we may not realize the impact we’re having.
I’m especially aware of this issue because problematic glaucoma patients are often referred to me. A substantial number of them come in worried and fearful. Many of them tell me that their previous doctor said, “I’ve tried everything. Nothing is working. I don’t know what else to do.” Those are very difficult words for a patient who is concerned about going blind to hear. Ironically, many of these patients have acceptable pressures and stable visual fields—but they’ve been devastated by what their previous doctor said.
Of course, it’s not just the patient who may feel negative emotions when managing glaucoma. While the patient is afraid of going blind, we can become frustrated when treatment doesn’t go well, and worry that we’re missing something or failing to do enough. I’ve certainly felt upset when trying to help a patient who is losing ground despite my best efforts. But I make an effort to keep my game face on, so to speak, and stay positive.
The Power of Awareness
One key part of the solution to this communication problem is simply being aware of it. If you pay more attention to the patient’s emotional state and the words you’re choosing, that can go a long way toward avoiding inadvertently increasing your patient’s fears.
Here are a few strategies to keep in mind:
• Don’t let the data become your sole focus. When we become frustrated and worried about a patient, one way of coping is to become very focused on the data and less focused on the patient and the patient’s fear. While scouring the data for something we might have missed is perfectly reasonable, not addressing the patient’s fear—or worse, increasing it by our choice of words—is almost certain to backfire. Addressing the patient’s emotional concerns should be an important part of every interaction.
• Remember that what you say is part of the therapy. We’re treating a patient, not just a disease. When your patient leaves the office, he isn’t so much aware of whether or not he’s losing vision; what he’s really aware of is whether he feels good or not. He’s thinking about whether he had a positive experience in your office; whether he feels more hopeful; whether he has some new ideas about how to avoid blindness; and whether he has a better understanding of what’s happening. The words we say are a very powerful and important part of therapy.
• Build up a reservoir of positivity. This helps the doctor and staff every bit as much as it helps the patient. I see many cataract patients and glaucoma patients in whom I’ve done cataracts. Most of them are do-ing very well, and I try to emphasize that to them, and also to my scribe. I say, “Look at this. This patient had 3 D of astigmatism and we put a toric lens in, and now she’s 20/20 with no correction. Isn’t that great?” This not only cheers the patient, it also boosts my morale, which can help when the patient in the next room is having all kinds of problems with a trabeculectomy or tube shunt.
That positive feeling also pays off in terms of patient flow. It’s hard to see patients efficiently if you’re focusing on the negatives; it’s much easier if you’re emphasizing that they’re doing well. This is not about generating false hope; it’s about seeing the positive aspects of their situation and dealing honestly with the challenging parts.
Emphasizing the positive is also very helpful for the staff. I think most people would agree that if you’re hanging your head and taking a negative and defensive approach to challenging situations, it’s going to permeate the whole clinic. The momentum is going to be in the wrong direction.
• Remember that you can’t delegate giving the patient hope. Whether time is tight or your own mood is negative, you can’t expect your staff to manage this for you. It’s just as much a part of our job as providing the right treatment.
Sometimes keeping the atmosphere fear-free is as simple as not letting problematic situations and perceptions arise in the first place. Ways to ac-complish that include:
• Avoid discussing target IOPs with patients. There is no upside to telling the patient what your IOP target is, assuming you have one. Patients take this very literally, and if they fail to reach the target they’ll have any one of a number of negative reactions, ranging from fear to anger to questioning your competence. If the pressure reading is 1 mmHg above the target pressure, the patient may conclude he’s going blind. You’ll end up spending a lot of chair time backpedaling and losing credibility.
I had one patient come in with a pressure of 42 mmHg; after a successful trabeculectomy her pressure was 20. Nevertheless, she thought I hadn’t done enough because the previous doctor said she needed to be at 15 mmHg.
Aside from whether your treatment was effective, there are a host of reasons to not put too much weight on achieving a very specific IOP number as a sign of success. IOP is not only highly variable in terms of what the actual pressure is, but if six different technicians take it, they may get six different numbers. (Not that you’d want to point that out to the patient!) And corneal thickness can cause us to under- or overestimate the pressure. There are so many aspects of uncertainty about what the exact IOP truly is that to focus on that as an endpoint with the patient is impractical at best.
It’s true that some patients will ask, “What pressure should I be trying to achieve?” When that happens I try to soft-pedal the issue and say, “We just want to be in a certain range.” That makes it a more modest goal.
• Always stay on the patient’s side. I’ve heard Eric Donnenfeld, MD, talk about this in relation to discussing premium IOLs with patients, but it’s also good advice when interacting with a glaucoma patient. Each of us has strategies we rely on when dealing with patients, and each of us knows that certain types of patient personalities are especially challenging. Some patients are in denial about their condition; some are depressed; some are looking for someone to blame. Sometimes it almost feels like a patient is setting a trap, looking for something to pounce on, and you can abruptly find yourself in an argument or controversy. “Why did you tell me to do this?” or, “You said this would happen and it didn’t.” I’ve found it very helpful in these situations to remember that my job is to stay on the patient’s side—no matter what.
• If a patient’s condition is borderline, emphasize the positive. Glaucoma suspects often ask whether or not they have the disease; it’s actually a common reason for referral. Patients have been told they have glaucoma by one doctor and told they don’t have it by another doctor, and they’re seeking some sort of closure or definitive opinion. To a lay person, it seems reasonable that a glaucoma specialist should be able to say definitively whether or not he has glaucoma.
I try to explain that the hardest thing to do in medicine is to definitively prove that someone doesn’t have something. I explain that if a patient has serious disease I can tell in a second, but it’s much more difficult to diagnose glaucoma when it may be just beginning. I tell the patient that it’s really a good thing that I’ve looked as carefully as I can and I still can’t tell. I note that the absence of any confirmatory signs or abnormal test results is highly reassuring.
There’s no reason to scare the patient, and this kind of answer helps avoid that.
When the Patient’s Losing Vision
Of course, we all have patients who are losing vision despite our best efforts. In those cases, these strategies may be helpful:
• Don’t express your fears to the patient. When a situation isn’t looking good, we may feel fearful for the patient. But nothing frightens a patient more than a doctor who’s afraid. What the patient needs from you is hope.
• Set realistic expectations. Many patients expect treatment to be associated with improved vision. Af-ter cataract surgery, patients may jump for joy that their vision is so much better, but that’s not a likely outcome of treating glaucoma. Here, preventing the disease from getting worse counts as success. So in a sense, we have to “sell” what we’re doing—and the patient may not get it, at least at the beginning.
For that reason, I think it’s important to spend time on this with a new patient to ensure that patient won’t lower his opinion of you and have increased fear when his vision doesn’t improve. (I have an easier time than many ophthalmologists in this regard, because so many of my patients are referred and somewhat desperate. They’ve already reached the point at which maintaining their vision is greatly appreciated.)
• When a patient isn’t doing well, emphasize your support. When a patient’s fear has some justification, it helps to remind him that you’re on his side; you’re on the case and you’re going to do everything in your power to maintain his vision and health. Again, don’t fall into the trap of becoming defensive or throwing up your hands and saying “I don’t know what else to do.” Emphasize that you are there for the patient.
Even when the patient’s vision is NLP, there are things you can do that can help. You can help him avoid discomfort, offer continually improving technology to help him adapt to life without vision, and even offer hope regarding future vision-restoring therapies that are currently under investigation.
• Review all of the information with the patient. It’s reassuring to the patient to see that we’re paying attention, that we’re following the disease, that we’ve documented the changes taking place. We all want to feel that our doctor is knowledgeable and cares about us. If you take the time to go over all of the data with the patient, she’ll feel that you have a plan and all of your resources are being brought to bear, as opposed to feeling that she’s going blind because you’re too busy to do everything you can to help.
• If progression has stopped, celebrate that with the patient. When treating glaucoma, stability, or the absence of worsening, equals success. It’s always a good idea to emphasize that to the patient and treat it as a cause for celebration.
When I find that a patient has stabilized, I say, “You’re doing great!” I talk to her about the visual field. especially if the field is normal. I say, “This is the most important test we do. This shows me that when tested with our most sophisticated technology, we cannot find any sign of loss of vision. That’s very reassuring, and that means you’re doing a great job.”
When You Start Feeling Negative
When treatment isn’t going well and a patient is upset, it’s easy to feel pressured and end up inadvertently making the mood in the room worse. To avoid that:
• Don’t take it personally or become defensive when treatment isn’t working. When we’re doing our best to help the patient and our efforts are not working, it can sometimes feel as if the patient is criticizing us. (Sometimes they are.) But most of the time they’re not blaming us; they’re just upset or unhappy that the therapy isn’t working—with all the implications that carries. So get in the habit of catching yourself if you find yourself feeling the need to justify or defend your treatment. It will only make the patient’s fears worse.
• Remember that negativity is seldom justified. When treatment isn’t working and the patient’s sight is diminishing, it’s easy to fall into feeling negative and overemphasizing the negatives, but there’s almost always something more we can do. If we’ve done everything we can in terms of medical treatment, we can recommend surgery, whether that means a referral or simply scheduling the surgery. And there’s usually some way to help the patient better understand and cope with the problems at hand. At the least, there’s almost always something we can say that’s reassuring.
• Never say “Nothing is working,” or “I don’t know what else to do.” If you really have run out of options, refer the patient. But don’t give the patient the impression that the situation is hopeless and he’s going to go blind, just because you’re frustrated. The patient is relying on you for options and hope, not pessimism.
Above all, never say, “I give up.”
• Don’t take a bad mood from one room to the next. Sometimes when an interaction has been challenging it’s hard to avoid carrying a bad mood on to the next patient. However, it’s possible to make a conscious decision not to do this. You certainly don’t want to make one patient feel negative about his status because the previous patient visit didn’t go well.
This can also be a cumulative thing. One day recently I saw six one-eyed patients in a row. For the most part they’re doing great, and for the most part I don’t think about the fact that they have only one eye. But I know that if I start paying attention to that, it will bother me. I’ve recognized that, and I’ve decided to keep my focus on the positive, for the benefit of myself, my patients and my staff.
• If you refer, make it about the patient, not about you. Sometimes, we’ve done all we can do to help a patient and we need to refer to someone else. In that situation, it’s easy to take our limitations personally and feel that we have to make excuses or apologize for not being able to help the patient. But it’s unfair to the patient to make the referral be about us. It should be about the patient, and how he can get the best outcome possible.
• If you refer, make it clear you’re still on the case. It’s important to refer in a way that shows you’re not washing your hands of the patient or giving up on him. Yes, in some situations we may be relieved that we’re passing the baton, but we don’t want to make it seem as though we’re dropping out of the picture. We need to create a smooth transition that doesn’t make the patient feel like we’re kicking him to the curb.
Letting the patient know you’re still part of the team makes a difference. When I send people to other doctors, it’s amazing how grateful they are if they have a good experience. They give me a lot of credit.
Ophthalmologists tend to be proud, strong-willed individuals. Nevertheless, I think most of us recognize that we have room for improvement when it comes to mastering communications with patients—especially when things aren’t going well. In an ideal world, we’d be able to take a course in patient interaction from an expert. (Even Tiger Woods has a coach, and general surgeons have begun to explore this idea.1) Unfortunately, to the best of my knowledge, such a course doesn’t yet exist for ophthalmologists.
Interacting with a broad variety of people who are often scared about the prospect of losing their vision is a challenge, and we don’t always say the right thing. But if we recognize that generating hope, not fear, is an important issue, with consequences for both our patients and our practices, we can find ways to do better. REVIEW
Dr. Brown is in private practice in Atlanta.
1. Gawande A. Personal Best. New Yorker, Oct. 3, 2011.