Who is the expert in directing your healthcare? Hint: It’s not your doctor.
You might not wear a white lab coat or have a medical degree, but you know your body best.
Of course, doctors are still very important in guiding your care. Research shows, however, that provider and patient relationships improve when they work as partners with good communication. This can lead to faster diagnoses, better understanding of treatment strategies, fewer expenses, and better health outcomes overall.
Being a patient is never easy, especially during a long or difficult illness. As you meet with different providers and face an onslaught of information, be sure not to let the voices of authority drown out your own.
“Some people are afraid to question the doctor, even when they don’t feel like they’re getting good answers,” shared Anita Mitchell, who advocates for colorectal cancer awareness.
Tracy Wildey, who was diagnosed with a thyroid disorder, also encourages patients to take their health into their own hands: “I had a really good OB-GYN, but this was not his world and I needed to do what I needed to do. Sometimes as women, we think we should just listen to what other people tell us and suffer through things. Don’t suffer through it. Don’t think it’s just part of life. Go get answers.”
Below are seven ways to exercise your own authority and raise your patient voice.
1. Find a partner in your provider.
As with all partnerships, finding the right person can be easier said than done. However, it is important to find a provider you trust who will take time to listen to all of your concerns. To raise your voice, you first need a partner who is willing to listen.
That’s what Amy Tomlin, a cervical cancer survivor, recommended when she shared her story with Health Stories Project: “Don’t take no for an answer – you know your body. If you feel that something is wrong, then go to someone who will do something. If you don’t feel like the doctor you’re going to is listening to you or meeting your needs, keep asking questions and don’t give up.”
Good doctors understand the value of another physician’s input and will not be offended if you ask their office to share your medical records and test results. Good doctors will have your medical records safely stored with some electronic medical records software to ensure nothing is lost. Many insurance plans will cover either a portion or the entire cost of a second opinion, though you should contact your insurance company to confirm.
If you need help looking for a good doctor, you can use online rating tools such as U.S. News and World Report’s Doctor Finder or Healthgrades. Primary health providers can also point you toward good specialists. Additionally, doctors often have websites that reveal more about their personalities and clinical experience. Using these clinic or doctor portals, patients can securely access all the features of their doctor or clinic, including making payments, choosing treatments, signing consents, and safely submitting medical records. Dental practice software, for instance, could offer patients peace of mind by feeling secure and safe while using the portal. Moreover, you can ask if the provider will talk with you by telephone before you commit to an appointment.
2. Prepare for meetings with your provider.
With Dr. Google available at all hours, you can research symptoms, treatments, and patient experiences before meeting with your provider. Use your research to create a list of topics you wish to discuss. These may include treatment options, medication side effects, diagnostic tests, or more.
Write down your questions and concerns beforehand so you don’t forget to address them. Many providers have a busy schedule and a long list of patients to see each day. Their time is precious, but so is yours. Make sure they answer all your questions during your visit. After all, this will save both of you time spent on follow-up phone calls and appointments.
It can also help to have a friend or a family member accompany you to your visit. When there is a lot of information to process, another person present can help take notes and review the questions on your list.
3. Use your symptoms to tell your story.
Be ready to share your story with your provider. Remember that you are not only sharing about your condition but who you are beyond your condition.
Emergency physician Dr. Leana Wen, author of When Doctors Don’t Listen, encourages people to answer a provider’s questions with details that reveal their interests, priorities, and lifestyle. Additionally, she says to go beyond listing symptoms and begin telling the story of their progression and their impact.
For example, if a provider asks you to rate the pain of your headaches from 1 through 10, don’t just settle on a number. Give a larger account of your life, such as: “I used to get tension headaches when I spent too much time on the computer, but I could tolerate those and keep working. With these headaches, I need to lie down to keep from feeling nauseous. I’m retired now and I spend a lot of time walking and boating outdoors. Recently, though, I’ve stayed indoors to avoid the sun, which makes my headaches worse.”
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4. Know your medical history.
Another important document for every patient to access is their personal health record. Originally used to facilitate communications among providers, personal health records are now available to patients as well. These records can offer patients greater understanding and control of their care.
Unlike medical health records that are edited only by providers, personal health records usually allow patients to make entries and updates. This is a good place to organize test results, medications, hospital bills, immunizations, and other medical records. Many of these personal health records are now electronic, making them more secure and portable. It is important that you stay on top of your medical bills, as otherwise, it could land you in big trouble. However, it can be easy to lose track of how much money you have to pay back. If you do end up in any medical debt due to not paying your hospital or medical bills, then it may be in your best interest to contact a professional, such as this medical debt collection attorney Jeffrey Mehalic who will be able to offer any help and support you may need when dealing with debt collectors. Facing a situation like this is why it is so important that you try and pay back any withstanding payments that you have.
For both patients and caregivers, tracking symptoms in a journal can be useful. This can help you identify patterns in how you feel or to make note of responses to treatments. Reviewing portions of the journal with providers can also lead to more insights about your care.
Journaling can also provide an emotional outlet or relief, like it did for Bill Coon, transplant recipient and organ donor advocate: “I initially began journaling for personal reasons, as I needed an outlet to vent.” Bill documented his procedures and treatments in his journal, and described his care team, feeling that it “showed the importance of nurses and the human side of medicine that is equally important as its scientific practice.”
5. Ask questions about tests and procedures.
According to a 2012 report from the Institute of Medicine, nearly $210 billion is spent annually on unnecessary services. These costs put a toll on hospitals, insurance companies, and especially patients.
In a national survey conducted by the ABIM Foundation, physicians reported the major reasons why they sometimes order unnecessary tests and procedures. The top three reasons were “malpractice concerns” (52%), “just to be safe” (36%), and “want more information to reassure myself” (30%).
For patients, unnecessary tests and procedures can lead to greater anxiety, according to a study published the Journal of the American Medical Association. Not only that, but these services require time, transportation costs, and sometimes unnecessary discomfort.
That’s why it’s important to discuss these procedures with your provider before making an appointment. Ask why tests are being done and how they will contribute to your diagnosis. These tests could also reduce the risk of you needing to contact a law firm similar to PC Law Group (click here to learn more) to find out how you can file a medical malpractice lawsuit, which could cause further unnecessary stress. In some cases, having these extra procedures could help to save your life. Make sure you know what will be required of you to complete the test, such as fasting from food or lying still for half an hour.
6. Coordinate your care team.
Care teams consist of providers, care managers, family and trusted friends. You are the core that brings them together. You get to choose who is on your team and what roles they play.
Some patients see many different providers at different locations. Dietitians, physiotherapists, and counselors may also be health professionals on your team. While providers try to stay in good communication with one another, it’s easy to miss something. You or your caregivers can often shed more light on the situation than computer records or physician notes. Don’t be afraid to ask questions or raise concerns. Try to keep all your medical records in one place, and bring these to every appointment and meeting.
As for family and friends, remember that everyone has different strengths and gifts. Some may be better at direct care, while than others may be able to provide financial help. Those with the gift of time can be there to cook, clean and offer company. Others offer support by sharing videos, inspirational quotes, or (for comic relief) empathy cards. Don’t be afraid to reach out to your network of friends and ask them for specific types of support. People are usually glad to help and to know what they can do.
7. Discuss your treatment goals.
It’s important to have a conversation with everyone on your care team about your treatment goals and expectations for quality of life. Every patient is different in what they can tolerate and what types of symptoms or treatment side effects prevent them from enjoying life.
Take time to reflect by yourself what your needs for treatment and quality of life are. Then, talk to your providers and work with them to set the goals for treatment.
Be sure to talk about this with your caregivers, friends and family as well. This will allow them to prepare for the best ways to care for you, according to your wishes.