How we talk to glaucoma patients is a critical part of their therapy. We may have a much greater impact than we know. But doctors rarely get any formal training in this aspect of glaucoma care. We are fortunate this month to have Nathan Radcliffe, M.D., Steve Gedde, M.D., and Jeffrey Kammer, M.D., give us their insights on what to say to glaucoma patients. The fear of blindness is powerful, but for many patients is way out of proportion to their actual risk. It is our job in these cases to convey hope in order to counteract their fear. Recently, an internist who I have treated for nearly 15 years asked me if I thought he would become blind in the next 10 years. His fear surprised me since he has been fairly stable, showing no change in one eye and progressing only slightly in the other. But his deep worry reminded me how easy it is for a patient to lapse into fear, even though he is well informed and I have always been very upbeat with him about how he is doing. Another challenge for us as glaucoma doctors is not to get discouraged and fearful ourselves about the course of therapy. Glaucoma treatment has many ups and downs and can be frustrating and make us afraid that we are not doing enough. Sometimes we may pass on our concern to the patient, and this can set up a vicious cycle of fear. Too often we may say things like, "I've tried everything" or "Nothing is working." This tells the patient that we have given up. If we are afraid or discouraged, how can the patient not be? We should try at every visit to help our patients better understand and deal with their glaucoma issues and convey to them a sense of hope. This is a high standard. Drs. Radcliffe, Gedde, and Kammer can help us reach it.
Reay Brown, M.D., glaucoma editor
A positive attitude means more than you think
Little is as demoralizing as being diagnosed with a chronic, incurable illness, especially when that disease is glaucoma, the second leading cause of blindness worldwide. Although the frightening statistics are widely reported for patients to fret over, thankfully they don't tell the whole story. In the U.S., for example, only about 120,000 of the estimated 2.2 million people with glaucoma are blind from it. The majority of vision impairment occurs in underdeveloped countries where access to treatment and follow-up care is limited. In short: Most patients do well with treatment, and it's imperative to make that message known. "The fear of blindness can be a powerful tool for the treating physician, but it must be used with great care," said Nathan Radcliffe, M.D., assistant professor of ophthalmology, Weill Cornell Medical College, New York-Presbyterian Hospital, New York. "In my opinion, too many practitioners instill a fear of blindness in order to increase compliance with eye drops. While this may increase adherence, it may also significantly decrease quality of life for the glaucoma patient, and the overall net effect is negative."
The better approach, said Dr. Radcliffe, is to empower patients to work to preserve their vision themselves, to make them feel they have some control over their prognosis through treatment compliance. "I partner with my patients, and empower them to have hope," he explained. "I tell them, 'I want you to be concerned just enough to take your drops and to see me in 4 months, but no more.' For glaucoma suspects, I often tell them, 'Please see me in 1 year, but until then, no worrying about your vision—that's my job.'"
This is easier said than done, but there are particular steps you can take to lead your patients down an optimistic path. For example, both Dr. Radcliffe and Steven Gedde, M.D., Bascom Palmer Eye Institute, University of Miami Miller School of Medicine, emphasize building a rapport with patients and getting to know them as people. "The ability for us to get to know our patients over many visits over many years is perhaps our greatest asset in glaucoma management," said Dr. Radcliffe. "By knowing our patients, their goals and their fears, we can tailor our treatment. This includes tailoring our definition of blindness and the patient's prognosis to appropriately motivate the patient to strike the right compliance balance."
"Because of the chronic nature of a lot of ocular diseases, we as ophthalmologists have a unique opportunity to build long-term patient relationships," Dr. Gedde said. "The most gratifying part of what I do is developing those relationships with patients, and I think it helps with overall treatment of the disease on several levels." The doctor-patient connection has a hefty impact on treatment compliance, which in turn affects how patients do overall. Patient education is another key aspect, but that doesn't mean overloading the patient with statistics. "I'm not a big statistic person," Dr. Gedde said. "I do try to instill some hope for the future rather than fear about the disease. We have much to offer to gain control of the disease. The field is a constant evolution, and we're developing new treatment strategies for patients in the future."
"I try to give patients the facts, tell them that most patients don't go blind but some of the ball is in their court; [they] have to use medications properly," said Jeffrey
Kammer, M.D., Vanderbilt Eye
Institute, Nashville, Tenn. "I try not to use words like 'tough,' but [say] it's a 'unique challenge' that you can get through, but we have to partner with the [treatment] plan." Naturally, part of that plan may be achieving a particular IOP range, but this isn't always information patients need to know because it may cause neuroses. "I never commit myself to a
specific [IOP] number because sometimes patients get a little bit obsessive about that. If the pressure is one point above it they may feel like we've been unsuccessful in their treatment," Dr. Gedde explained. Both Drs. Kammer and Gedde encourage patients to involve family members in their care, finding that support helps with compliance. If a patient appears in your office alone during an initial visit, ask if there's a loved one in the waiting room who can sit in on the discussion. "Particularly the first time they are here, the only thing [patients] hear is they have glaucoma, and they miss everything after that. So it's always great to have a second set of ears," Dr. Kammer said. "I encourage family members to participate in the discussion and also make sure I answer any questions they have," Dr. Gedde said. Of course, having an upbeat attitude is easy when things are going well. It's after a failed trabeculectomy or other surgical intervention that physicians' confidence is tested. "If a person is suffering based on something we've done surgically, we take that to heart a little bit more," Dr. Gedde said. "It's important not to let it weigh you down and to continue to be positive during those times because your patient depends on you to do that. You can't get defensive, and sometimes there's a tendency to be defensive when things aren't going well."
Patients need to feel you're in their corner, and sometimes that means following up with them more often than absolutely necessary. If you're stuck, there's no harm in turning to colleagues for a second opinion. "Two heads are better than one," Dr. Gedde said. "If it's done in the right way it helps patients feel more comfortable as well." For example, when Dr. Gedde looks to his colleagues for guidance, he makes sure the patients know he's not giving up on them. "I'm still their doctor and actively involved in their care," he said. "But I think it's valuable to get input from someone else. That strategy can be very helpful and comfort patients during difficult times."
Editors' note: The doctors
mentioned have no financial
interests related to this article.