During Sunday’s frantically paced #HCSM Twitter chat, one of the topics that came up was the problem of getting help and learning when you have a new diagnosis. That is when your brain usually goes into some sort of frozen state, and you forget important things, like that you already knew some of this, or how to spell the words, or to ask how to spell the name of the thing you have. You know, things you would think of if you weren’t sitting there stunned.
I had two recommendations. 1) Ask a librarian for help, ASAP, especially a medical librarian. 2) Look for suggestions or lists of questions you should be asking, just to make sure you don’t miss something important. Here are some resources and tips for both.
#1: ASK A LIBRARIAN
A lot of people replied that it isn’t as easy as I think to ask a librarian. Not because they were embarrassed about asking, but because they couldn’t find a librarian. Oh. Really?!? Oh, wow.
So first thing I did was post a couple of links on where and how to find medical librarians. Now, of course, you can always ask a healthcare professional, it is just I assume that you’ve already tried that, or that your appointment was too short, or that you didn’t think of the right questions then. Libraries are great for just dropping in and asking for help.
National Network of Libraries of Medicine: Members: http://nnlm.gov/members/
Medical Library Association: For Health Consumers: http://mlanet.org/resources/consumr_index.html#2
MedlinePlus: Find a Library: http://www.nlm.nih.gov/medlineplus/libraries.html
healthfinder: Find Services Near You: http://healthfinder.gov/FindServices/
Library of Congress: NLS Reference Directories: Library Resources for the Blind and Physically Handicapped 2009: http://www.loc.gov/nls/reference/directories/resources.html
Ed.gov: Library Search: http://nces.ed.gov/surveys/libraries/librarysearch/
Worldcat: Libraries: http://www.worldcat.org/libraries
Internet Public Library: Library Locator: http://www.ipl.org/div/liblocator/
The next concern was along the lines of “What about finding a librarian at 3:00AM when I can’t sleep because I’m so frantically worried about everything that’s happening right now? Librarians are hard to find at 3AM!”
Believe it or not, there is a solution for this, too.
Internet Public Library: Ask Us: http://www.ipl.org/div/askus/
“This service runs 24 hours/day, 7 days/week during most of the year.”
#2: FINDING THE RIGHT QUESTIONS
When you are first diagnosed, there can be this sense of urgency, a need to find out everything you need to know, except … where do you start? There is so much to learn! What do you need to know first? What questions should you be asking?
For most diagnoses, someone has written up a list of questions for exactly this. The problem is first, thinking to ask what questions to ask, and second, finding these lists of questions. It is kind of like being granted three wishes in a fairy tale, with the rule “No wishing for more wishes!” Far too often, people find out later questions they wish they had asked at the beginning.
There are a few search strategies I’ve found helpful over the years for finding these. You can ask a librarian for help, but you can also do your own searches. For each of these examples, try adding in the name of your diagnosis to the search strategy given below. Try changing the word “doctor” to the type of health professional you are seeing — nurse, or therapist might be other choices.
See what lists of questions you find. Then write down the questions you like, and make a list. Order the questions by what’s most important, because sometimes there won’t be time for all of the questions.
“ask * doctor”
Remember these tips from the Agency for Healthcare Research and Quality — Questions ARE the Answer.
AHRQ: Questions are the Answer: http://www.ahrq.gov/legacy/questions/index.html
They have ten standard questions, and a tool to build and print your own custom question list. Here are the ten basic ones.
1. What is the test for?
2. How many times have you done this procedure?
3. When will I get the results?
4. Why do I need this treatment?
5. Are there any alternatives?
6. What are the possible complications?
7. Which hospital is best for my needs?
8. How do you spell the name of that drug?
9. Are there any side effects?
10. Will this medicine interact with medicines that I’m already taking?