Tamirra Stewart, who sustained a traumatic brain injury (TBI) when she fell six feet from a scaffold in 1991, remembers going to a doctor after having a generalized tonic-clonic seizure a few years post-accident. "I didn't have a neurologist at the time, so I looked online and found one through a local university," says 51-year-old Stewart, who lives in the Seattle area. "When I went for my appointment, I knew right away there was a problem. We weren't communicating very well. He made me uncomfortable, and my gut told me to find a different doctor."
Robert Spekman had the opposite experience. He's had Parkinson's disease for 34 years and has had the same team of doctors for the past decade. "My neurologist and neurosurgeon are thoughtful, respectful, and genuinely concerned for me and my well-being," says Spekman, 72, of Charlottesville, VA. "Information is shared both within and across departments, so all aspects of my care are seamlessly handled."
Doctor-patient relationships are like any other relationship: Some are good, and some not so good. But establishing a good one is especially important—and worth fighting for—for people living with neurologic conditions, says Chad Hoyle, MD, associate professor of neurology at Ohio State University in Columbus. Patients with chronic conditions usually require long-term care and may be working with their doctors for many years, he notes. And research indicates a good relationship may result in better health: An article published in The Primary Care Companion for CNS Disorders in 2015 reviewed case vignettes and previously published literature and found that a successful doctor-patient relationship improves satisfaction, enhances the exchange of information, and, most importantly, can alter health outcomes.
"Most patients know that doctors want to do right by them," says Dr. Hoyle, who makes a point to get to know his patients. "Learning details about the lives of my patients helps me connect with them better and make more informed treatment decisions."
For some people, especially those with cognitive impairments due to a TBI, Huntington's disease, dementia, or other condition, communicating clearly and understanding everything that's happening in the exam room can be challenging. Stewart admits she sometimes has trouble following the conversation with her doctor and has brought a family member or friend to act as "translator." When she is by herself and doesn't understand something, she asks her doctor to slow down and rephrase his remarks.
People often feel undone when they are initially diagnosed with a neurologic disorder and may miss important information, says Stephanie L. Bissonnette, DO, MPH, assistant professor of neurology at Boston University School of Medicine. "Most patients don't hear anything when they're in shock, so a follow-up appointment is particularly helpful," she says.
When Dr. Bissonnette first diagnoses patients, she gives them a new patient folder that includes instructions, clinic information, and background on their condition. She encourages patients to bring a friend or companion to the follow-up appointment that she schedules one month later. At the follow-up, patients are more likely to absorb the information, and a companion provides another set of ears, she says.
Strong communication skills, listening ability, and empathy are some of the top qualities that patients should look for in their doctors, says Danielle Ofri, MD, PhD, clinical professor of medicine at NYU School of Medicine and author of What Patients Say, What Doctors Hear (Beacon Press, 2017). "Offering empathy, asking open-ended questions, involving the patient in a treatment plan, and checking again and again to make sure patients understand what's being said are all key to making people feel better," she says. "Good communication lowers anxiety, raises patients' confidence, and makes them more likely to adhere to treatments."
A physician's listening skills are critical for Spekman. "I am looking for the doctor's undivided attention, someone who does not appear rushed to get to his next patient," he says. The same is true for Trish Palmer, 35, a nurse who has relapsing-remitting multiple sclerosis (MS) and lives near Columbus, OH. "My neurologist always sits down with me in the first five minutes of the appointment to talk with me and ask questions. By sitting and not standing, he makes me more comfortable telling him what's important."
Know Your Needs
One of the first steps in choosing a neurologist is identifying the qualities that matter most to you. Besides a doctor's personality traits and communication style, determine what else you care about. Do you want someone who's affiliated with a top medical center? Do you prefer a specialist or a general neurologist? Do you need a doctor who speaks a language other than English? Would you feel more comfortable with a doctor who is male or female?
Once you've created your list, consult with your primary care physician, family, and friends. "Researching online can be valuable, but a personal recommendation from your primary care doctor or word of mouth, including from other physicians, local hospitals, or patient support groups, is another important way to find a neurologist with the right combination of compassionate bedside manner and expertise for your condition," says Dr. Hoyle.
Express Any Misgivings
Letting your doctor know how you feel about something—no matter how trivial it sounds—is vital, says Dr. Bissonnette. Feedback from one of her patients reminded her of an important protocol. In the process of diagnosing somebody, Dr. Bissonnette ordered some tests. Before receiving the results, she talked to the patient about a disease she thought the patient had. When the test results came back negative, the patient was relieved but confided that she'd spent a lot of time worrying. "Sharing that with me was a good reminder to wait for the tests to come back before speculating about a diagnosis," says Dr. Bissonnette.
If you have any concerns about a doctor's procedures or behavior, you shouldn't hesitate to communicate with them, says Dr. Bissonnette. Lainie Ishbia, 48, has Charcot-Marie-Tooth disease, an inherited neuromuscular disorder that necessitates wearing leg braces for walking and maintaining balance. During one of Ishbia's appointments, her neurologist walked in with several residents, which made her uncomfortable: "He said hello, and instead of talking to me directly, he talked to the residents. He never introduced anyone and never asked me if it was okay if the residents joined him during the appointment."
Ishbia, who runs a blog called Trend-Able for people with disabilities interested in fashion accessories, called her doctor and told him she was disappointed in his behavior. "I think I heard him say sorry, but I'm not totally sure, and I decided not to see him again."
Ask for Attention
To some patients, it can seem that doctors spend more time inputting information into their computer or tablet than examining them, says Dr. Ofri. Spekman, for one, does not like how younger doctors take notes on their electronic devices. "Perhaps it's a generational thing, but this kind of behavior turns me off," he says.
If you're not getting the attention you need, simply ask your doctor for a little bit of focused listening, suggests Dr. Ofri. Ask him or her to put down the device. "Something as straightforward as 'Can I just have a few minutes of your time?' will usually get the doctor's attention and help you get your questions answered," says Dr. Ofri.
Be Realistic
Think in advance about what you want to ask the doctor, says Dr. Hoyle. Coming to an appointment with 40 or so questions is impractical, he says. Instead, identify the main reason for the visit and pose two or three important questions. At the beginning of the appointment, give a concise description of your health condition, Dr. Hoyle suggests. "This helps patients immediately connect with their doctors and allows doctors to understand the concerns and figure out how to help," he says. Patients shouldn't feel rushed when they talk to doctors, he adds, acknowledging that patients in sensitive or difficult situations will need more time.
Patients expect empathy from their doctors, but they also have to appreciate doctors' busy schedules. Because Trish Palmer is also a nurse, she's very aware that doctors may be pulled in various directions and distracted, and she's respectful of their time. "Patients should assume that doctors are juggling multiple patients and responsibilities," she says. "Just being aware of that is helpful."
Polite acknowledgment of doctors' hectic lives is good too, says Dr. Ofri. She recommends saying something like "I can see you're busy, but there's one more question I have" or "I see you're running behind, but I don't feel like all my questions got addressed." Dr. Ofri says, "Showing empathy helps build a stronger bond with your doctor."
How to Be the Best Patient
Your relationship with your neurologist is a two-way street. Chad Hoyle, MD, associate professor of neurology at Ohio State University in Columbus, recommends these strategies to improve it.
Come prepared. To make the most of your appointment, have a list ready of your main concerns and questions. This will help you and your doctor stay focused.
Bring a buddy. A friend can take notes and help you remember your doctor's advice and, if necessary, remind you of what you wanted to talk about in the first place.
Be transparent. Tell your doctor about any new symptoms or changes in your health. Be open and specific, so your neurologist can recommend the best treatment plan.
Discuss medications. Your doctor should have a detailed list of what you take, including prescription and over-the-counter medications as well as herbs, supplements, vitamins, and any alternative-therapy treatments. He or she can then assess the potential for harmful interactions between medications and whether you're taking them in the safest and most effective way. Tell your physician about any side effects or other concerns, such as costs, that may interfere with your taking your drugs. Be sure to take medications as prescribed; not doing so could lead to adverse outcomes or ineffective management of your condition.
Request clarity. If your doctor's suggestions are unclear, ask him or her to repeat them or provide instructions in writing.