Sunday, July 17, 2011

Being Heard

The following post was originally posted to the MPD Chat Listserve on July 7, 2011 as the 3rd installment of the collumn: Communicating and Connecting: Getting What You Need From Your Health Care Team

Being Heard – Number 3

In my last column, published on MPDchat on June 23, 2011, I offered some suggestions for questions that you might ask your docs and health care team members so you have the information you need to fully participate in health care decisions. This column offers some suggestions when your clinician is not responsive to our needs.

I know some docs respond with impatience or get annoyed when we tell them we have questions or that we need to engage in a discussion about our condition or treatment options. Some clinicians get defensive and feel threatened if we bring information or research findings from online sources, such as the MPDchat listserve or MPD Forum. Many health care professionals may be uncomfortable if we know something that they don’t. However, these are not excuses for being short or dismissive. It is my view that physicians should take whatever time is necessary to address our questions and concerns, or perhaps set up a follow-up to allow for a longer discussion. At a minimum, they should refer us to someone in their practice or clinic who has the time to respond to our needs.

Having said that, I know it may be hard to be assertive and speak up and ask for what we need. Even though I am a physician myself, I take time to prepare for my medical appointments even though I have a very responsive and personable oncologist.

So, here are some suggestions for how to help your doctors engage respond to your questions, concerns, or needs:

• 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 or to share concerns 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 suggestion below]. If he/she says might have to say, "I don't feel comfortable moving forward with the plan 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 that 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.

• For those docs who jump right in as soon as they walk in the exam room and start their evaluation and exam, you might need to prepare a way to share your agenda at the very beginning of the visit, for example, "Hi….before we get started today, would it be ok if I told you what was important for me to accomplish today?

• If you have a sense that it is time pressure that is getting in the way, you might say, “I know you are pressed for time, so I thought you might want to know what I am most concerned about…(wait for response); or:” I really value the time we have together to review the management of my condition. So, before you tell me what you would like to get done today, I’d like to tell you what I need. Is that ok?”

• 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 these suggestions are helpful for helping you have more productive conversations with you health care professionals. As always, I am interested in your ideas and experience. Let us know what works for you.

Best wishes,