Communication must be a two-way street
Rare disease patients often battle a variety of complex clinical symptoms. A visit to your specialist often results in as much confusion by the end of your appointment as at the beginning. Healthcare providers are often under pressure to keep patient face time to a minimum, so clear communication is a vital step in understanding your plan of care.
Your doctor needs accurate information to help you. It’s essential patients with short-term memory problems or mild cognitive impairment pre-plan for what they need or expect to learn during their appointment. Gary keeps a small daily notebook where he records his vitals, notes about medication or symptom changes, fluctuations in blood pressure, pain levels and new questions.
Without this health diary, he is unable to remember significant details or forgets essential questions whether an appointment is a few months down the road or tomorrow. He brings his notebook to every regular office or hospital visit. Physicians find details with dates and times very helpful. It also helps if you can tell the story of events leading up to a specific incident. I was doing my usual ____ late in the afternoon, and then I was doing ____ when I started to feel______. A detailed explanation is more helpful than My ______hurts. Just keep it brief.
We saw proof during a recent visit to his sleep doctor. Gary has been rotating through many different APAP masks while they try to find one that will work for him. He was able to search his diary for answers as the doctor was reviewing specific incidents on his APAP recordings.
Remember, your physician is not a mind reader
Unless you speak up providers can only assume you understood everything they discussed during your visit. How often, if you’re a patient with a severe hearing loss, have you just smiled and shook your head in agreement? Don’t allow embarrassment to stop you from asking someone to repeat information as many times as necessary. If you don’t, you will return home frustrated and angry because you missed valuable instructions.
When you visit your healthcare provider, you need to practice practical communication skills so at the beginning of every encounter remember one word.
Before you begin your exam ask your provider to please:
Allow a few moments at the end of your visit for questions.
Note that you require written information about your symptom or condition.
Suggest you would like clear written instructions regarding what steps you are to take if your condition becomes worse.
Write down all the medical terms, names and words that describe your condition.
Explain things to you in easy to understand words
Repeat any information or terminology you are not understanding.
If your healthcare team is allowed to become familiar with your specific communication needs, I think you’ll find they will appreciate a better understanding of your problems and concerns. You benefit by becoming an active and informed participant in your plan of care.