One of the topics we discussed at the recent Joint Decisions Empowerment Summit** was doctor-patient communication. This is actually a pretty highly charged topic with people on both sides of the equation having strong feelings. I’m sure that the vast amounts of medical information available on the Internet has greatly influenced those discussions. There are no doubt doctors who wish that some of their patients would lose Internet privileges forever while many of us on the patient side are grateful for the vast repository of information at our fingertips that we can access and research.
One of the points made during our Summit discussion is that we generally have about 15 minutes with our doctors on a routine checkup. That’s not a lot of time and so we have to make the most of the time we have. Getting a voice in the conversation (while not disrespecting your doctor) is essential to this goal.
My friend Pollyanna Penguin recently posted about making a list so she would remember all the things she needed to discuss at her much belated appointment (https://pollyannapenguin.wordpress.com/2015/11/20/hospital-appointment-only-7-months-late/). This is a technique I use as well because it (1) helps set the stage for the areas I need/want to discuss during the appointment and (2) helps me remember things that I might otherwise forget. Other bloggers at the Summit also used lists. I tend to just hand my list to the doctor at the beginning of the appointment. Other bloggers, however, did so stealthily including secretly writing notes on their hands (like they were cheating on a test …).
There are a lot of other things to help support doctor-patient communication. Some of these include:
- First you have to find a doctor who will actually listen to you.
- In addition to lists, I also will take use my phone to take photos of swollen joints, rashes, etc. that may or may not be apparent when you actually get to see the doctor. That way I have something to show my doctor during the appointment.
- If you have a desired outcome from the appointment, start there. Instead of saying (for example) you’re having increased pain, start out saying something like, “I would like to discuss additional pain medicine,” or “Do you think physical therapy would be helpful for ..”, or “Based on my increased pain levels, do you think it’s time to evaluate changing my treatment plan…” The doctor may not, of course, agree with you, but at least there’s a start to the conversation and the doctor knows which option you prefer.
- Be specific if you can. Don’t just say your pain levels have increased, indicate where and whether the pain is new or simply worse in the same areas.
- Don’t fall into the trap of “today”. Rating how you feel “today” on a pain scale or even generally does not apply to RA. You might have been totally incapacitated the day before and then be well enough to do handstands in the doctor’s office. When asked those questions, I tend to respond, “Since the last time I saw Dr. Rheum, I have felt XYZ.”
DO NOT take in a stack of Internet printouts and expect your doctor to read them and respond in the course of a 15-minute appointment. Better you should summarize and discuss along the lines of, “I read some interesting research from Big University the other day that said XYZ. Is that something that would be applicable to me?” Of course, if they ask about the study, it’s nice to have a copy with you just in case.
But overall, you have to be honest with your doctor. If something is not working, don’t be afraid to tell them. They can’t fix what they don’t know.
I hope whatever conversations you have today are productive and bring joy to your life. Thanks for checking in.
**Janssen Biotech, Inc., paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.