Today, limited appointment times, overwhelming and confusing volumes of information available on the Internet, coupled with the stress of having a rare disease diagnosis, might mean patients don't always get the answers they need to make informed decisions about their care. Clear communication can have a positive impact on patient satisfaction, treatment adherence, and self-management. Improving communication in any relationship is helped by respect for each other and the ability to manage expectations. Establishing friendly relationships and showing appreciation for your doctor and the staff is important. When you work well with your healthcare providers, it enables them to focus on your condition and to make the best use of the time they have with you.
Even though your doctor may explain a diagnosis, test result, or treatment option, if you do not understand the explanation, it has not been an effective communication. Most doctors (and their nurses) went into practice because they wanted to help people. Some are better at communicating to patients than others. Asking the right questions-and obtaining quality information about your diagnosis, treatment, and recovery-help ensure safety, prevent errors, and improve health. Here are some tips for getting the most out of your visit to your doctor.
- Set an agenda for the visit. Ask yourself, "What do I want to get out of this visit?" Write down the top three things you want to discuss. Focusing on your agenda will help you make the most of your time.
- Ask for the time you need. When you make an appointment, let the staff know if you have special concerns that might require a little extra time with your doctor. If, after your appointment, you still need more time, find out how you can call or email your doctor with concerns.
- Be prepared. Bring a list of your symptoms and/or questions so you don't forget to bring them into the discussion. A word of caution: If you feel you're being answered in "doctor-speak," ask for an answer in plain language you can understand.
- Explore your options. Once your
physician has prescribed a treatment for your condition, ask these questions:
- Is there more than one treatment for my bone marrow failure disease?
- If so, what are the pros and cons of each treatment?
- With which treatments have you had the most success in other patients like me?
- What are your experiences with these treatments?
- Learn about your medications. Once you and your doctor identify a treatment, learn what you can about procedures or medications you may be taking. Knowing what to expect from your treatment can help be a big benefit. Here are some key questions that can help you get started:
- What kind of medication is being prescribed for me?
- For what length of time will I be taking it?
- What can I realistically expect from this medication?
- What are the medication's typical side effects? Can I combat these side effects, and if so, how? Do these side effects diminish over time?
- When might I start noticing the medication's results?
- Are there possible interactions with other medications I already take?
- If the initial medication is unsuccessful, what other options exist?
- Are there foods, drinks or activities I should avoid while taking this drug?
- Don't withhold information. Your doctor or nurse is not a mind reader. If you don't share information because it is too sensitive, please reconsider. Your health team can make better recommendations when they have all the facts.
- If you are not getting your questions answered, be assertive and persistent. It may feel awkward or be difficult to deal with an impatient physician. Remember though, you are the customer! And without "customers," physicians have no practices. So don't leave the office until you have answers to all your questions. And be sure they're answers you actually understand.
- Bring a member of your personal support team. Going to the doctor can be overwhelming. Asking a family member or friend to come along can help. This person can help you ask questions, write down answers, and ensure you get answers you understand - four ears are always better than two. They can also provide emotional support.
Communication is key to the success of any relationship. Remember that building a trusting, positive and rewarding partnership with your doctor will take both time and effort. There may be ups and downs along the way. But trust your instincts. Is the relationship a good fit for you? If yes, do all you can to make it work. But if not, acknowledge that you may need to hand over your care to someone else. Visit Standing Up for Your Health to earn more about how to be an empowered patient.