How Patients and Health-care Providers Can Improve the Epilepsy Clinic Visit Experience by Randy Perkins, MPAS, PA-C, FNP Editor’s Notes by Robert S. Fisher, M.D., Ph.D., Editor-in-Chief of epilepsy.com Edited by Robin Owen, Managing Editor The goal of a successful clinic visit is to provide accurate and meaningful medical care for the person and family living with epilepsy. Because epilepsy is a complex disorder, many factors require consideration. Effective communication between the patient and the health-care provider is critical. However, communication is often hindered by misunderstandings, misaligned expectations, lack of information and/or different objectives and orientations. This article addresses how to improve that communication process from the perspective of a person who has epilepsy and who is also a provider of medical services to patients with epilepsy. A successful clinic visit can be like preparing for a marathon race; it takes practice, planning and a team approach. As patients, we expect our care providers to care about our best interests. As healthcare providers, we want to improve our patients’ lives. Epilepsy clinic visits, as opposed to orthopedic, cardiac, ENT and other specialty medical care, require a different type of attention to detail from all parties. Successful epilepsy management encompasses a multitude of lifestyle management issues as opposed to addressing an isolated problem. Seizure management is only one piece of the puzzle. I see this issue from both sides—I have been a physician assistant and family nurse practitioner for thirty years—and I have had epilepsy since high school. I provide medical care to people with epilepsy and I receive medical care for the same or similar types of problems. Let’s look at some of the issues that we, as patients, need to take into account (Table 1). Bottom line; health care is a business. Editor’s Note: Agreed, but time is a bigger limiting factor than is money for many health-care providers. focused on our epilepsy/health issue. Our provider attempts to focus on the same issue. However, when our health-care provider walks into the room, the clock is ticking. You can help to streamline and increase the efficiency of the visit process. Table 1: Issues to address for an epilepsy clinic visit • Be on time for the appointment • Jot down seizures, medications and questions • Prioritize questions, put the most important first; time is limited • Leave smaller issues for other visits • Don’t accept advice blindly; consider it • Ask about medication side effects • If seizures are uncontrolled, seek an epilepsy specialist • Do not be afraid to ask for or seek a second opinion • Ask for take-home materials (selectively) • Learn to seek information on the Web • Address psychological, social and quality of life issues • Participate as a consumer and advocate First, be on time for your appointment. You wouldn’t be late for a job interview. Health-care providers are often paid on a production basis (directly or indirectly). They are driven by insurance companies, stock holders, peer-review boards and a host of groups that monitor their performance. Second, prepare yourself for your doctor’s questions. Before the visit, write down important facts that you can provide to your doctor (e.g., dates, aura sensations, seizure diary, drug side effects). Remember, don’t overdo it. Few things will burn out a provider more quickly than a book of questions! The clinic nurse can be an excellent resource for you; March 2009 Epilepsy: Insights & Strategies 29 When we see our health-care provider (physician, physician assistant, nurse practitioner, etc.), we are How Patients and Health-care Providers Can Improve . . . Perkins but potentially dangerous side effects. Then, if another side effect develops, go back to the big list to check if it is there. this is the clinic traffic director. Through him/her, you can know how much time you are allowed for the appointment and what, if any, records will be needed. Understanding and preparing for this phase will help better utilize your visit time. Editor’s Note: Discuss with your doctor what written information is useful, and don’t overdo it. A diary of seizures and medications is always useful. Stay tuned to epilepsy.com, where we are preparing a “Clinical Organizer” section, with a Seizure History Organizer and Seizure Diary. Print-outs of these will be very useful to your physicians. You might be the walk-in with a complicated question or in a specialty clinic with a very simple question. Your doctor may have been up half of the night or just come out of a near death surgery. Consider all the above possibilities and evaluate for yourself whether you are receiving sound medical advice—sometimes it is a matter of common sense. I have been a patient in various epilepsy treatment programs. Some were helpful, but some were an embarrassment to the medical profession. I was once told to leave my car in a parking lot and to get home “the best that I could” from a clinic visit. I was sevenhundred miles from home. I have been given loading doses of medications with little or no explanation of likely side effects and sent home with no follow up. Prescribers have a legal duty to tell us the common potential medication side effects. Editor’s Note: You can find additional information about seizure medications in the “Seizure Medications” section of epilepsy. com. Switching gears quickly in daily medical practice is what professionals are expected to do and they usually do a good job. However, they need our help. Do not add the “oh, by the way…” clause at the end of the interview. (“…I have a sore throat,” “…I can’t see like I did five years ago”). Keep your questions and answers focused. What happens when you don’t understand the answer? Ask again! “Doctor—please tell me again but more slowly and in terms that I can understand.” Have realistic expectations of your provider. If you are expecting to tell your life story and you only have a ten-minute appointment, then you might want to either reschedule, ask for extra time (it will be billed as such), or prioritize your questions—understanding that some may not get answered. Taking along a friend or relative can be helpful if you have trouble remembering or need help writing down instructions. We would like to think of health care as a compassionate business. However, it is still a business and our providers have very real human characteristics. You might be fortunate enough to have a provider that respects your needs and is able to give you his/her undivided attention. A more common scenario is that you are seeing a provider who is on call for the clinic, has an unorganized (or super-organized) nurse, and/or has a limited knowledge of your diagnosis or medication side effects, or the hundreds of other epilepsy-related issues. Editor’s Note: The package insert or online list of medication side effects can be frightening and overwhelming. For legal reasons, a large number of unlikely side effects get listed. Use your doctor, nurse or pharmacist as a guide to the most common and expected side effects, and a few of the unlikely However, they are not obligated to tell us less common side effects. Whoever you see should give you written instructions, including telephone and email contacts. I once asked a doctor if I could drink alcohol. “Just don’t try anything stronger than pot or hash. Stay away from that LSD,” he said. If the advice sounds questionable, then ask for clarification or options. Editor’s Note: Never hesitate to seek a second opinion. And, don’t worry about hurting your doctor’s feelings in doing so. A responsible doctor who cares about your welfare will welcome another look and new ideas. Think of yourself as a consumer in a business transaction. I sometimes think that I am better prepared to buy a used car than I am to advocate for my own health care. Too many times, I have gone into the doctor’s office with useless information. Being your own advocate means doing your homework. We all have access to numerous websites and blogs—the Internet is an invaluable resource for epilepsy support and information. 30 Epilepsy: Insights & Strategies March 2009 How Patients and Health-care Providers Can Improve . . . Editor’s Note: How can you tell whether information on the Internet is accurate? The best way is to know and trust the source of the information. Advice from your peers can be great, but may or may not apply to your particular situation. Perkins medical school, many clinicians are simply fearful of epilepsy. The only stupid question is the one that is not asked. There is a huge learning curve in epilepsy education for patients, families and providers. Your provider expects questions. If you think a referral is appropriate, then ask for one. Ask about take-home materials. A thoughtful provider will be well supplied. Instructions can easily be forgotten before you have left the consultation; medication-specific data is a prime example, but there are numerous topics. Ask about follow-up contact information that will allow you to reach your provider with urgent questions. Many providers have very busy schedules, but a pending seizure may not wait until five pm. The ability to make phone contact with your doctor or your clinic nurse is essential. Learn how to navigate epilepsy web sites such as www.epilepsy.com for your educational needs. Place this and other similar sites on your “favorites” list. These sites will be your consumer and advocate friends. As always, parents should monitor children on chat lines to avoid predators. Lonely people looking for friends can become easy targets. Therefore, use all sites wisely. Education and awareness empower the patient to advocate for better epilepsy management. Depression is an often overlooked area of epilepsy management. Tell your doctor if you think that you are depressed or have thoughts of suicide. Sometimes, providers fail to consider the importance of balancing traditional medical management with psychiatric management. This means that depression can be overlooked. Many patients are not aware of their depression or other mental health issues. If your provider has not screened you for depression, then raise the issue. Remember, you are the consumer. Ask your provider’s opinion on the use of the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E, http://www.epilepsyfoundation.org/about/related/ mood/moodscreening.cfm). This is a six-question survey that can guide depression assessment. Your provider may need to refer you to a psychologist or psychiatrist for part of this management. If ignored, mental health issues can significantly impair epilepsy management. Many epilepsy patients have found themselves marginalized in society. Life can be empty if a March 2009 Epilepsy: Insights & Strategies 31 In the “precomputer” era, patient education often amounted to whatever magazines were in the clinic waiting room, or oral instructions from the hurried physician. There are many ways in which you can receive and give help to others. Ask your provider if he/she can recommend a local epilepsy support group. Some doctors defer patient education matters to a clinic nurse, a physician assistant or nurse practitioner. This may be done because some educational services cannot be billed. Sometimes it is done because other providers simply do a better job and/or have more time. The neurologist (or better yet, epileptologist) has a better appreciation for the more specific problems confronting people with epilepsy. Editor’s Note: An epileptologist is a physician, usually a neurologist, with additional training, experience and expertise in treating people with epilepsy. I have been a patient consulting with a neurologist. As providers, they can be incredibly knowledgeable. The problem is that they can’t always know what we need. Therefore, our questions can help to guide them. For example, if you fear the loss of your driver’s license, then you need to identify that concern. If you are worried about pregnancy, suicide, or job loss, then you need to identify those issues. If you don’t get answers to your questions, then ask for a referral to an appropriate specialist. Specialty consultations with epileptologists are essential to addressing the intricacies of your condition. You can’t see a specialist for every question, but this kind of expertise provides valuable guidance for yourself and your primary care provider. Epilepsy is certainly a field that requires specialty referrals. However, some clinicians cling to outdated paradigms of epilepsy management. Some are reluctant to review current research or practice evidenced-based health care. Perhaps because they have had limited exposure to epilepsy management in How Patients and Health-care Providers Can Improve . . . Perkins person cannot hold a job, drive a car, play sports or have friends because of seizures. Successful epilepsy management addresses a broad range of psychological and social issues. A successful clinic visit should have the potential of addressing those issues within certain limits as previously mentioned. Editor’s Note: The best seizure doctors consider not just seizures, medications and tests, but how to maximize quality of life. For example, some seizure medicines stop seizures completely, but with so many side effects that the quality of life is lower than before. These issues should be front and center in a clinic visit. a process that establishes optimal patient care. This obligation requires the patient’s participation as a consumer and advocate. Preparation prior to the clinic visit is critical. Become a partner in your health care. The goal for successfully managing epilepsy, besides effective seizure control, is a meaningful life. Randy Perkins has had epilepsy (both partial and generalized seizures) since high school. He is now fifty-eight years old, married (Sandy), father of four grown sons (Jon, David, Matt, Tim) and a grandfather. One of his sons, Matt, has just returned from the Iraq war and is a first-year pharmacy student. Initially, Randy was a high school English teacher. He switched careers and has practiced as both a family nurse practitioner and physician assistant (general medicine) since 1980. He is also a legal nurse consultant and owns Perkins Legal Medicine, LLC. His interests include his family time, deer hunting, making venison sausage, travel and learning foreign languages. It is important that each party, patient and provider, communicates productively in the clinic visit. The patient’s obligation is to understand his/her role in Do you have insights in the following areas? We are looking for people who write or speak to an issue such as: • • • • • • • • • • • • • • • • • Not alone: how to connect with the epilepsy community Dealing with the stigma and prejudice attached to epilepsy Seizures during military service Epilepsy and insurance Strategies for coping with a bad memory How to advocate for epilepsy Recreational safety: how to protect without being over-protective How to establish local support groups Biofeedback as a complementary treatment for epilepsy Attention deficit hyperactivity disorder (ADHD) and epilepsy How epilepsy impacts the life of the caregiver/spouse of a person with epilepsy Employment issues that arise when on disability. Strategies for gaining and keeping a job when you have epilepsy Using self-hypnosis for easing seizure triggers Methods of stress reduction and management How to find economical transportation options How to help swallow pills Contact Robin Owen, Managing Editor robin@epilepsytherapyproject.org. 32 Epilepsy: Insights & Strategies March 2009