More suggestions for communicating with clinicians

See below for a post I made several months ago on the MPD-Chat listserve in response to posts by members describing serious communication barriers with their docs and other members of the health care team. (The link to MPD chat can be found in the link section of this blog).

I know some docs respond with impatience and even disdain when we tell them
we have access to sources of information online. Some get defensive and feel
threatened when we know something they do not. These are not acceptable
responses, in my opinion.

Having said that, it may be hard for any patient to be assertive and speak up. And it may be harder to leave or find another doctor, though this is certainly preferable to having a doc who puts roadblocks in the way of providing, or at least considering, the latest and most effective treatments.

So, here are some ideas for how to let your docs know you have concerns, and some information to share with them:

• Prepare for the visit by writing down your specific concerns and questions. Prioritize them so you can be sure to ask the most important one or two.
  
• Ask permission to ask questions, and share concerns and/or information: At some point early on in the visit, say: "Doctor....I have some concerns (or questions) that I would like to share with you about the treatment you have recommended (or we have planned). Would it be ok if I shared them with you? (Most docs will say yes...and then you can ask questions and share your concerns [see next suggestion below]. If he/she says no....you might have to say, "I don't feel comfortable moving forward with xxxx while I have unaddressed concerns". Hopefully, this will trigger a response. If
  not, you might have to ask "Who else in the practice/clinic can address my
  concerns?"
  
• Share your discomfort/worry/concerns: "Doctor, I need to tell you
  I am worried about xxxx and xxxx." If they change the subject or give an
  inadequate response, give the doc a second chance and repeat the statement. If
  you get a defensive response, you might say, "I know there is no way to
  eliminate all the worry...however, I'd appreciate knowing your ideas for helping
  me get through this". Finally you might ask, "What would you suggest I do to
  address my remaining concerns?" Hopefully, they will respond with something
  thoughtful, offer a referral or second opinion, or at least offer increased
  monitoring or ways to check up on you.
  
• Let your team know that you have been doing some reading or checking online, and share the source of the information. (e.g., moderated online support group; medical journal article, medical news service, national cancer institute site, etc.). Bring a copy of the article or reference with you. Again, ask permission to share it with your doctor. ("I found some useful information that I would like to share with you from[mention source]. Are you willing to review it and give me your opinion?" Again, if they say no, share your concern about this and ask whether someone else inside or outside the practice would review the material you have brought.
  
• Ask for increased monitoring and follow-up. If you have any remaining concerns or worries, ask for ways you might get in touch with your treatment team to get help for any problems that arise and make sure you have a follow-up appointment before you leave. You can ask, "Who should I connect with if I have a problem or question? What is the best way to get through?"

I hope this is helpful.