The Informed Consent for Treating DME

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Patient communication is extremely important when one uses lasers to treat diabetic retinopathy. You must remember that in spite of your best efforts to relate the concepts involved, there is a strong tendency for the patient's expectations to be very different from reality. It is certainly reasonable to provide the patient with ancillary information, such as discussions with office staff, video tapes, and handouts. But don't depend on such things to replace you. (Besides, when was the last time you read that handout your dentist gave you about proper flossing?) Ultimately, it is the relationship that you foster with the patient that will— hopefully—keep them motivated to persist with the generally distasteful and often-lifelong pursuit of having their retinas lasered.

You should, first of all, take a deep breath and try not to display the overwhelming sense of near-drowning that one feels on a busy clinic day. You don't necessarily need to slow down so much that you can light your corncob pipe and wax nostalgic about doing lasers with Laura Ingalls Wilder at the Little House on the Prairie. You should, however, remember that your patient will not be impressed by how many exams and lasers you can cram into an hour, but rather, by whether you take the time to carefully explain things, answer questions and skillfully anticipate unvoiced concerns. Make sure there is a family member or friend in the room, too. Having another person in the room will give the patient someone to share the experience with, and the second set of ears will be more functional than those of a stressed-out patient. It is simply a given that the average patient will be unlikely to remember much of what you say. Priluck, et al., wrote a fascinating paper on the ability of patients to recall an informed consent discussion concerning retinal detachment surgery.1 On average, patients could only remember about 57% of what they had been told, and only 23% remembered the discussion of surgical risks.* Furthermore, patients would commonly state that anything that they did not remember had not been discussed. This is why you have to hyper-document anything you say—because in the polemic world of legal medicine, the paperwork becomes the reality, which is kind of absurd.

*And only 3% remembered that they could have a hemorrhage or infection that could destroy the eye. Think about that the next time you give some wired boomer attorney your best clear-lens-extraction spiel.

What all this really means, though, is that if you truly care more about your patients than about how your paperwork might look to a trial lawyer, you should realize that the data you provide may not be as important as the way in which you deliver it. A machine gun burst of risks will get the job done fast and will meet the "letter of the law" in your chart, but it is unlikely that the patient will remember much of it. However, a slow, careful discussion, with attention to the patient's concerns, will create a far better memory of the mood of the process in the patient's mind, even if the actual facts can't be remembered. Simply knowing that the doctor is actually interested in trying to transmit the information may be as important as how much is retained. In other words, you can probably deliver an informed consent in a completely unintelligible language, like maybe Klingon, but if you do it in a way that conveys that you will take all the time in the world to be sure the patient understands the situation, you will have accomplished a lot more than if you list the complications and then have them sign on the dotted line. (That was perhaps a bit hyperbolic, but hopefully the point is made.)

On a darker note, remember that although you know you are a good person, people are constantly reading articles about maniac doctors cutting off the wrong leg or defrauding Medicare. In addition to having trouble understanding the nature of diabetic retinopathy in general, patients may also have an imperceptible lack of trust that can blossom into something really bad if a complication occurs. You have to anticipate this and recognize that careful communication from the start is the best way to avoid trouble.

In any event, here are the concepts to convey, regardless of how you choose to convey them (preferably not in Klingon)...

You have to make sure the patient has at least a rudimentary understanding of the pathophysiology involved by using your favorite analogy. For diabetic macular edema, this usually involves something like, "the diabetes has changed the blood vessels in your eye from nice new pipes into old rusty pipes, and they are leaking the clear fluid that is in blood. This makes the retina swell up like a tiny sponge in the same way the old veins in people's legs can leak and let their ankles swell up." Or anything similar to that—you can adjust it to the patient's level of interest and sophistication.

It is important to point out that, with macular edema, the vessels are not hemorrhaging actively; many times patients will have been told that they have "burst blood vessels" or "hemorrhages in their eyes," and they visualize some horrible Niagara Falls of blood exploding out of their head. Terms like this generate unnecessary stress, and patients will wonder why you aren't treating the whole thing as a dire emergency and immediately lasering their gushing blood vessels into submission. You really want to dwell on the fact that you are dealing with interstitial fluid leakage and that any microscopic blood spots are really just old bruising and not any sort of active hemorrhage. Incidentally, using the word "bruising" to refer to intraretinal hemorrhages of any sort seems to be a much less inflammatory term than "blood" or "hemorrhage." It tends to avoid the whole Quentin-Tarantino-Kill-Bill connotation and gives you a fighting chance that the patient's mind will not seize up and will, instead, continue to follow your discussion.

It is extremely useful to have the patient's photographs, fluorescein angiogram and/or OCT available to show them during this discussion. If you can demonstrate a normal-looking fundus and then show them their own hard exudates and blot hemorrhages moving into the fovea, it is a lot easier for them to understand the gravity of this situation, especially if they do not have a lot of symp toms. This also allows you to point out the fact that you are treating well away from the center of the vision. You would be surprised at how many patients have an unvoiced concern that your main goal is to simply chop away at their vision like a Civil War barber-surgeon and that, just maybe, they might be better off going blind slowly without treatment, rather than letting you hurry things along with your foolish laser.

The patient must also understand the goals of the treatment. They strongly assume that your laser will help improve things. Partly, this is because any time they have gone to a doctor in the past, the doctor usually does something that makes their life better, such as fix a sore throat or stitch a cut. They also know lots of people who have had lasers (YAG and LASIK) and who saw much better immediately after the laser; the distinction between your laser and those lasers can be quite, uh, blurry.

Welcome to the world of retina—a place where patients tend to get worse no matter what you do, and where you will spend a ton of time trying to convince your patients (and perhaps yourself) that going bad slowly is the greatest thing on the planet.

You need to clearly point out that without treatment there is a very good chance the patient will be losing vision over the next one to two years, and that the goal of treatment is to slow down the rate of decay so that instead of ending up terrible, they end up only a little bit worse. This concept is remarkably hard to convey to even a sophisticated patient. Many doctors use terms that suggest to the patient that their vision will stabilize, but even in the best of circumstances, most diabetics don't remain the same.

Here is why you can't promise them stability: Even if your laser works superbly, diabetics can still have gradual deterioration of their visual quality—the fine print is harder to read, going from light to dark is trickier, it is harder to see traffic signs, etc. Although you can very effectively overcome large-scale damage like macular edema, you cannot as easily overcome the gradual deterioration of retinal function that occurs at the cellular level with diabetes. And, as with many retinal treatments, you may be very happy with the results but the patients usually aren't, and they will be particularly unhappy if you have not made sure that they have appropriate expectations.

You may also find that this discussion needs to be repeated at every visit, which becomes tedious, but the perception that diabetics have of the laser can change over time. Initially, there is a strong tendency for patients to assume that a given treatment will make them better, and you have to address such expectations as discussed above. Later on, there is a tendency to assume that any visual problems they have must be from the laser and not from progression of their disease, and you often have to constantly address this as well. Don't forget that

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Responses

  • Joshua
    Can I ask... do you have a medical degree or are you a trained Diabetic retinal opthamologist? I only ask, as I am a type 1 diabetic who has Moderate NPDR after 33 years with the illness who goes every six months to Joslin for my eyes and has done about 12 years of my own research into it. Just curious. I enjoy the personality and humor, but unless you have retinopathy, it is tough to read such lighthearted joking about such a life altering condition.
    8 years ago

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