Understanding Patient Expectations
JASON S. SLAKTER, MD
When I first started practicing about 20 years ago, the options for treatment of most macular diseases were quite limited. At that time, thermal laser was the only available therapy for macular degeneration and diabetic retinopathy, and clinical studies had not yet clearly defined the role of laser photocoagulation in retinal vascular occlusive disease. A macular hole was a condition that was observed and evaluated, but the approach to repairing these defects surgically had not yet been developed. Much of our day-to-day practice involved telling patients, "There is nothing that we can do today, but maybe someday there will be a treatment for your condition."
Well, times have changed, and treatment options for many of these conditions are numerous and often quite successful. In spite of these advances, however, many of our patients present with conditions that cannot be treated or with damage that has advanced so far as to be not amenable to current therapeutic techniques. Given our higher level of expectation, it is certainly much more difficult for a practicing clinician to simply tell a patient that there is nothing more can be done and send them on their way. Furthermore, most patients, hearing the various news reports and public pronouncements of "breakthrough therapies for restoration of vision" are understandably expecting, or at least are anxiously hopeful for, a solution for their visual problem.
PROCEEDING WITH CAUTION
So what do we tell these patients with conditions that have resulted in significant vision loss for which treatments are not currently available? When talking to patients and their families, I always try to find something hopeful in their situation, such as the concept that, at least with macular degeneration, they are not likely to lose all of their vision and will be able to maintain most of their independence throughout their lives. But patients expect more, and offering them the prospect of intervention in the future with stem cells, gene therapy, or artificial retinal technology to me seems appropriate, if presented in the proper fashion. When discussing these possible treatments, however, we must always temper the enthusiasm for these "miracle cures" with the realities of the time and effort required for their development and the potential obstacles that may occur along the way. It is a difficult balance to achieve and a very fine line between giving false promises and offering hope for a potential for better vision in the future.
Since I suspect that the approach taken with patients varies among retinal specialists, I would like to invite you, the readers of Retinal Physician, to submit comments or suggestions that we can publish in the journal as a means to initiate an open dialogue on this topic.