When telling a patient that they have a debilitating chronic condition or other bad news, a neurologist should plan ahead for the difficult conversation. Robert Charlson, MD, assistant professor of neurology and psychiatry, NYU Langone’s Multiple Sclerosis Comprehensive Care Center, New York, NY, recommends that patients bring along a supporting individual to an appointment in which he will provide a diagnosis. “Patients have many questions about symptoms, workup, prognosis, and decision-making regarding treatment,” he says. “A parent, spouse, or friend who accompanies a patient can serve a critical role by recording information as well as acting as a source of further questions or history.”
Pay attention to the setting, as well. “Ensure that everyone is sitting comfortably in a private room and can focus on the discussion,” Dr. Charlson says. “Be sure to allot enough time to answer questions. Many patients report that when a physician appears rushed or impatient, it adds considerable stress and worry to an already incredibly difficult situation.”
Paul T. Twydell, DO, director of Neuromuscular Medicine & Electrodiagnostic Laboratory, Spectrum Health, Grand Rapids, MI, advises sitting across from the patient in a quiet room away from the computer, making eye contact, and speaking in terms that the patient will comprehend.
Luis J. Mejico, MD, professor and chair of neurology; professor of ophthalmology, SUNY Upstate Medical University, Syracuse, NY, begins conveying a diagnosis by summarizing the clinical scenario and pertinent ancillary testing results. “From there, we move on to the actual or more likely diagnosis,” he says. “I find that putting a name to the condition whenever possible decreases anxiety and sets the stage for an open and frank conversation.”
Early on, Dr. Charlson likes to ask what the patient understands about his or her condition. “It is critical to know the patient’s beliefs about their symptoms and what they know about the possible diagnosis,” he says. “This allows the physician to engage the patient where he or she is at, and will set the stage for a more productive discussion. Once I understand more about the patient’s expectations and beliefs, I am better equipped to deliver even very difficult news in a more supportive way.”
Things to keep top of mind
Conveying empathic understanding and support for the patient going forward is crucial, says Dr. Charlson. It is also critical to review the workup with the patient, and to discuss any further testing that needs to be done to confirm a diagnosis. Frequently pausing the discussion to ask if the patient understands, and even having the patient summarize what you have discussed, can be helpful as well.
Dr. Twydell has found that many patients are actually quite educated about common illnesses and therefore are more receptive to medical jargon. “Others just want to know directly what they are dealing with and what they need to do,” he says. “Still others rely heavily on family members to direct the conversation.” Regarding amyotrophic lateral sclerosis, most patients and family members are reeling from hearing the bad news, so you should probably save details about prognosis and treatment options for subsequent visits. “I will often set up a follow-up appointment soon after giving the diagnosis,” he says.
For Dr. Mejico, providing an overview of the diagnosis and focusing on management options, expected course, and prognosis are crucial. “Developing an action plan is important, as it directs the overall care and helps to manage anxiety provoked by the news,” he concludes.