An unwelcomed diagnosis or other bad news can devastate a patient and his or her loved ones. Is there anything a neurologist can do to help ease the difficulty of receiving such news?
Luis J. Mejico, MD, professor and chair of neurology; professor of ophthalmology, SUNY Upstate Medical University, Syracuse, NY, believes it’s important to relay the truth in an empathic, yet scientific and evidence-based way. “Allow the patient to process the news and allow room for their questions and comments,” he says. “A common mistake providers make is to deliver a lecture on the subject, leaving a brief question and answer period at the end. Instead, after a succinct discussion on the matter, you should leave room for the patient to speak, ask questions, and comment freely.”
When diagnosing a patient with multiple sclerosis, Robert Charlson, MD, assistant professor of neurology and psychiatry, NYU Langone’s Multiple Sclerosis Comprehensive Care Center, New York, NY, has found that many patients have a thousand questions. “Neurologists should give patients clear directions about how to contact them with further questions,” he says. “I also convey that a serious new diagnosis is not something that someone accepts right away, but rather it’s a process. For many patients, it can take months or even longer before they feel comfortable with a diagnosis and how it affects them.”
Relaying a sense of empathy and understanding is not always easy, especially when the patient’s or family’s emotions are running high. “One of the most important messages to convey to any patient receiving bad news is that they will have an ongoing treatment relationship with their physician,” Dr. Charlson says. “Many patients report that as much as they may fear the symptoms of a diagnosis—especially for neurologic diseases without clear treatments—they are equally afraid of being abandoned by their doctors and caregivers. Reassuring patients that I will be there to help them manage their symptoms, even when an underlying diagnosis is not clearly treatable, can be a powerful counterweight to their fears.”
Referring patients to social workers for support is also a good idea. Dr. Charlson asks social workers to provide resources regarding advocacy groups, support groups, and other community programs to help a patient manage a new diagnosis.
Even for devastating diseases like amyotrophic lateral sclerosis, Dr. Twydell thinks it is important to offer some hope that either an alternative diagnosis will emerge or that their progression may be slower than typical without avoiding the disease’s grim reality. “People need time to mourn their loss and accept the diagnosis,” he says. “When appropriate, start the process by focusing on the present and encouraging patients to find things in life that provide them with satisfaction and joy. Sometimes the focus is so much on the negative that they forget about the other positives in their lives that the disease does not affect.”
For amyotrophic lateral sclerosis, it is important to explain to patients that although no cure exists, many options are available to ease the burden of the disease. From adaptive equipment for daily living and ways to improve breathing and swallowing, there are means to minimize suffering.
It is also important to broach the topic of research. Dr. Twydell explains to patients that by participating in research, they help physicians and future patients understand the disease better and possibly find new treatments or a cure. “This has to be tempered with the reality that their participation in research trials is unlikely to affect their disease’s course,” he notes.
After answering all of a patient’s questions, Dr. Twydell tells them that sometimes it’s useful to hear a diagnosis from more than one physician—and that it won’t affect their relationship if they decide to get one. He also reassures the patient and his or her loved ones that they should never hesitate to call or e-mail with new questions or concerns or to clarify topics already discussed. “A hug or a gently placed hand on the arm or shoulder may also be comforting,” Dr. Twydell concludes.