This article is written by Martine Ehrenclou, M.A.. Martine is a patient advocate and award-winning author of The Take-Charge Patient. Learn more about Martine and her work at thetakechargepatient.com.
You’re sitting in your physician’s exam room, clothed in a gown as anxiety creeps up your neck and cools your fingertips. What is the doctor going to tell you about your symptoms, the recent test results, the reasons for her probing questions and the slight frown on her face? Or was that frown a product of your imagination?
She walks in and greets you with a smile. Amid the initial conversation, you might be wondering what is in your chart — is it something that could change your life, or is it nothing? Perhaps your fear was unfounded and you imagine yourself exhaling, your body giving into relief as your doctor tells you that everything is fine, normal.
But that isn’t what she says. She slowly introduces a diagnosis that requires treatment, perhaps a few more tests or even a procedure. While your mind is struggling to take in the medical information, your thoughts flash to your kids at school and who will take them if you have to be at a medical appointment. You’re also wondering what to do next. Just let the doctor handle everything and go along for the ride?
Being a passive patient doesn’t work anymore in our increasingly complex healthcare system. But being a proactive and well-informed patient does. According to a 2011 Commonwealth Fund study, patients who take an active role in their healthcare find that the quality of their care increases and their care experience improves.
When facing a new diagnosis, becoming your own best advocate is about participating in your care so you can partner with your provider on what is best for you.
Following are a few simple steps for becoming your own advocate in the face of receiving a new diagnosis or in anticipation of receiving one. The more you know, the more empowered you feel.
• Bring a loved one with you to your doctor’s appointment. It is very helpful to have someone with you to take notes, ask questions you might not think of, and to help you distill the information afterward. Not because you’re inept or cannot do the job yourself, but because the emotional stress that comes from being in a doctor’s office, combined with hearing new medical information about a diagnosis, interferes with memory. It does for all of us.
Bring a pen and paper if you don’t have a loved one to accompany you, or to take notes in your smart phone either during or immediately after your appointment. You’ll want to record your diagnosis, proposed treatment plan and any tests or procedures your doctor suggests for you so you can refer to them later. According to The Journal of The Royal Society of Medicine, 40 to 80 percent of medical information provided by health care practitioners is forgotten immediately and almost half of that information is retained incorrectly.
• Participate in your care. Becoming informed about your diagnosis and proposed treatment plan is an important part of being your own best advocate. Besides, being part of the act instead of the audience increases your self-confidence as a patient and helps to reduce any sense of helplessness or vulnerability. It also increases confidence in your doctor and the treatment plan.
• Ask questions. If you don’t have a chance to prepare questions in advance of your appointment, create a list of questions and either call your physician or make another appointment for a brief conversation.
Sample questions are:
• What is my diagnosis? What will it mean for my health?
• What will the treatment do for me?
• What are the risks and benefits of the treatment you suggest?
• What are the side effects?
• Are there alternatives to the treatment?
• What will happen if I do nothing?
• What does the recovery entail?
• How long will it take me to get better?
• What can I do to support my recovery with diet, exercise or lifestyle changes?
• Research your diagnosis. Of course you trust your doctor but doing a little research and becoming well informed about your diagnosis allows you to participate more fully in your care and supports you having more effective conversations with your medical providers. Ask your doctor for printed materials on your diagnosis, books and websites she likes.
Try not to simply plug your diagnosis into Google. This can bring up scary and inaccurate information. Go to respected websites that provide credible information, such as medical academy websites, disease organization websites, government websites and medical school websites. These end in .edu, .org. and .gov. There is a list on my website.
• Get a second opinion. If you receive a serious diagnosis or are unsure about your diagnosis, get a second opinion. This can alert you to alternative diagnoses or treatment options that you and your doctor may not have discussed or simply can confirm your original diagnosis (very worthwhile). Don’t be shy about asking your doctor for a referral to a specialist for a second opinion. If you are nervous, you can say something like, “I trust you and really value your care. For my own confidence, I’d like a second opinion. Can you recommend someone?” Your doctor should not be offended.
• Obtain copies of your medical records. You don’t need copies of your entire chart but you will need copies of pertinent test results, your doctor’s report about your diagnosis and copies of any other tests that relate to your diagnosis such as MRI, CT scan etc. Put these copies in a file labeled, “My Health File.” Any time you see a new medical provider about your diagnosis, you can withdraw what you need instead of lassoing the information from other sources when it may not be convenient or timely. Part of becoming your own advocate is taking control of what you can.
• Research proposed treatment plans. After your doctors have suggested a first line of treatment and have discussed alternative options, you’ll want to research these. It’s important that you feel comfortable with the treatment you’ll be going through. Trusting that it is right for you is essential for its success. If you have doubts, gather more information. Go to the websites I suggested and ask your doctors for more information. Discuss the options with loved ones. What treatment can you tolerate? What is your preference? Do you understand all your options? Do you understand the risks and benefits? Do you know what the recovery is? How long will it take until you are better? What are the side effects?
• Talk to others with the same diagnosis. If you have family members, friends or colleagues with the same diagnosis, ask questions. Others who have been through treatments can offer you support and comfort, but also valuable resources and information.
For example, you can ask, “Who was your doctor and were you happy with his/her care? Which treatment did you go with and were you comfortable with it? Can you tell me what to expect?”
There are also online health communities that have disease/medical condition specific sites with members who share your diagnosis. Even though you may not know them, online health communities such as Alliance Health or support groups found at disease organizations can offer great support and useful information. Combating any sense of isolation is important. Since I’ve had a severe chronic pain condition for 16 months, I know. I wish I’d have known about online health communities when I was ill. It would have helped prevent some of the isolation I felt at that time.
• Create a support system. Asking family, friends or neighbors for help can sometimes be difficult. I think you’ll find that most who care about you really do want to help. Perhaps you need assistance with caring for a child or elderly adult, or you need help with grocery shopping or someone to drive you to a procedure or treatment. Ask. Reach out. You can always offer to return the favor.
• Ask your doctor if your health insurance covers any proposed treatment plan. When considering a treatment such as a procedure or surgery, you may not know what is covered by your health insurance plan. For example, if you are to have a procedure that requires anesthesia, you’ll want to find out if the anesthesiologist is covered by your insurance. Sometimes they are not. Ask questions.
Martine Ehrenclou, M.A. is a patient advocate and award-winning author of The Take-Charge Patient: How You Can Get The Best Medical Care