There is likely no individual who cares more about your health outcomes than you, and next your closest loved ones. As such, you need to be your own patient advocate and be prepared to advocate for those in your family. Successful medical appointments require a team approach. The patient and doctor are each experts in their given field. The doctor has the medical training and background necessary for diagnosis and a treatment plan. The patient or their care provider has the background on family history, personal medical history, and current medicines, treatments, health behaviors, and symptoms. Together the doctor’s medical expertise and your contextual information work synergistically when both parties do their jobs well. This collaborative arrangement will be most successful if you follow the patient advocacy ABC’s.
A: Ask Questions1
When a doctor tells you about a diagnosis, treatment or medicine, if you don’t ask questions they assume you understand. One of the most important strategies for a successful appointment is to bring a pencil and paper, write down what the doctor says, and be sure to ask, “What does that mean?” for any information you don’t understand. It is your responsibility to let them know you don’t understand, and most doctors will happily provide more information until you do understand. Other key questions may be, “What are the side-effects?”, “When can I expect to start to see results?”, and “What symptoms warrant concern and a call into the office?”. Finally, be sure you ask whom to call if you have future questions.
B: Be prepared1
You need to have a plan when you come to a medical appointment. Write out the questions you would like answered and in order of importance. Have a copy for yourself to take notes on and give a copy to the doctor when they enter the room. Doctor’s schedules are very full and they need to move quickly to see all their patients. Do not be the patient who spends their allotted appointment discussing toe nail fungus, but then mentions recent chest pain as the doctor is walking out the door. Last minute announcements will often result in you being asked to reschedule a follow-up appointment to address that concern or being referred to the emergency room if the doctor feels your late announcement requires immediate attention. This will be frustrating to both you and the doctor.
C: Communicate your needs1
Again, a doctor can only make decisions with the information you provide them. The untold details will limit the potential care you can receive and thus the likely outcomes of your treatment. For example, if your physician is recommending lifestyle changes in diet or exercise that you do not feel you can successfully implement, you need to communicate the barriers you have to their recommendations. If you want additional options in medications or alternative treatments than what is being presented, you need to ask for them. Be upfront and honest about what you need and what you are capable of doing. This may include financial or time limitations. For example, if your doctor is recommending a costly treatment you cannot afford, they might be able to connect you to resources that can assist with those costs if you identify a financial hardship. For example, some hospitals have scholarships to cover certain treatments for qualified individuals. Finally, do not be afraid to request a handout you can take home or a web-link to a video or tutorial that will provide more in-depth information you can review later when you are less stressed.
D: Document what you are experiencing
You don’t need to record every detail about your health if things are going well, but it is often useful to have a journal to bring to an appointment with a 10 to 30 day record of the symptoms that are bothering you. Also, prepare a personal medical history (surgeries, diagnoses, and medications) and a family medical history that you can print and bring with you to each new physician you see. This ensures that you don’t forget something important and that every doctor you see has the same background medical information about you. In your health journal, be sure to record your medicines, symptoms, treatments, and even sleep, bowel habits, pain, diet, and exercise if they seem relevant to what you are experiencing. For example, if you are having abdominal pain or GI distress, your doctor will want to know the type of pain (stabbing, dull ache, etc.), frequency and incidence of pain (when you use the restroom, after eating, etc.), bowel frequency and consistency (liquid, mashed potatoes, logs), medications taken, and food intake. While it may seem unnecessary to mention this information to your neurologist, the symptoms you are experiencing may be the result of a dietary change or supplement or medicine that this doctor has recommended. Also, there is an interconnection between gut health and your brain. A neurologist may end up referring you to a gastroenterologist to explore these symptoms further, but it is not necessarily inappropriate for him to be made aware of them.
E: Explore Creating a Care Team
No one doctor can be an expert on all conditions, medicines, and treatments. Ideally, each person should have a primary care physician who handles their routine medical care (colds, flus, keeping up to date on vaccinations, mild symptoms, etc.) and who oversees their specialty care. Some people try to eliminate a primary care physician and only see specialists, but this is not an effective strategy to get the best possible care. First, most experts will identify that they know a lot about their specific specialty, but they aren’t comfortable discussing or speculating on other areas. A neurologist knows a lot about the brain but is not an expert on dermatology. A primary care physician is trained to handle routine care and to connect patients to appropriate specialists based on symptoms needing additional testing, diagnosis, and treatment outside of their scope of expertise. They also keep tabs on the diagnoses, medications, and treatments you receive from specialists to ensure there are not interactions or duplication of services. For example, your rheumatologist may prescribe a medication for joint pain, not realizing you have a personal history of bladder infections and a family history of lung disease, both of which are common side-effects of the medicine they just prescribed. As an expert on your overall general health, your primary care physician may pick up on the contraindications of using this medicine at your routine annual appointment when you give them your medication list. Think of your primary care physician as the road map and each specialist as an inset map. While the inset maps are very detailed and are the best choice for precise movements in a finite space, they become less useful if you don’t know how they all connect together. This is like your medical team… your primary care physician helps coordinate the information from all the specialists to increase your chances of successfully navigating the medical system to get to your goal destination of improved overall health and function.
F: Find the right fit
It is important to assert yourself if you have a problem with the care you are receiving. An actively involved patient or patient caregiver knows what he or she expects from a doctor. A successful doctor and patient relationship requires communication, listening, and trust. Every person should expect to be taken seriously and treated with respect. Accept nothing less and do not be afraid to seek a second opinion.
G: Get Actively Involved
You will get the most from your medical care if you become an informed consumer. This does not mean to start reading up on symptoms and self-diagnosing and self-prescribing treatments. What it does mean is to ask for references from your physician on books, articles, or reliable web sites to learn more about your condition or their recommended treatment. Read the research on your condition and possible treatments. Be informed about the limitations and side-effects of your medicines. Then, come to your next appointment informed and with prepared questions for your doctor. For example, if you participate in the RE:mind program, you will return home from the retreat with a bounty of information to discuss with your physician. It is likely they are not familiar with some of the treatment options recommended, as new research and scientific breakthroughs are being reported daily. Call and ask their nurse if you can send them the company web-site and maybe some resource information before your appointment so they can familiarize themselves with the purpose of your upcoming appointment.
Remember, just like a parent is likely to be deeply invested in the outcome of their child’s education, so should you be invested in your personal medical care and the medical care of those you care for. Document your personal medical history, your family medical history, and any symptoms you are experiencing. Be prepared with a checklist of questions and concerns, in order of importance, and write down the answers you are given. Keep asking questions until you get an answer you can understand or are referred to a person or resource that can help. Make sure you see your primary care physician annually and keep them abreast of the specialty care you are receiving. Don’t settle for a physician who isn’t meeting your needs. Finally, learn all you can about your condition and treatment options so you can keep the dialog open with your doctor. You are the expert on your medical history, what you are experiencing daily, and your capabilities and limitations for enacting care recommendations. The doctor is the expert on the particular condition you are seeking help for. If you approach your appointments with this partnership mentality, you are likely to have greater success at finding a favorable treatment option and leaving empowered to implement the doctor’s recommendations.
Written by Marci L. Hardy, PhD
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- WebMD. Change from passive patient to an active advocate for your own health care.http://www.webmd.com/healthy-aging/features/be-your-own-health-advocate?page=2. Accessed September 16, 2016.