Diabetes Self-Management Blog

I just finished reading the responses to one of Jan’s recent blog entries ("Blowing My Top [If Not My Chai Latte]") about the criminal lack of communication some health-care providers give patients and families. It seems that many doctors do not give patients even basic information, or tell us how to get it.

So how can we protect ourselves and get the care and information we need? Even the best doctors and other professionals need us to be fully active and involved in our treatment. And many doctors (as the comments on Jan’s entry show) are not all that good, requiring us to be even more active.

What Can We Do?
Here are some common mistakes people make with their doctors. I’ll give some ideas on how to avoid them, and I hope you will contribute your own ideas.

  • Assuming doctors can read your mind. They can’t. Usually, they have no clue about what is going on with you beyond your lab results. So you have to tell them. In response to my blog entry “Speaking Up for Myself,” Mleafrn (who I suspect is a nurse), wrote “When dealing with any health-care provider, it is essential that we tell them assertively what is going on.”
  • Waiting until the last minute. Some of us wait until the appointment is almost over before bringing up our real problems. This happens a lot with potentially embarrassing problems, such as sexual difficulties, digestion problems, or family crises. If you wait until the doctor has his hand on the doorknob to leave, he won’t be likely to give you the attention you need. Bring the most important stuff up first!
  • Not being organized. I advise people to prepare for an appointment like it was a job interview or a business meeting. Mleafrn wrote, “Keep a journal or at least a list of problems or concerns to discuss. Time is limited in appointments so be assertive and organized in what you need to say to get the treatment you need.”
  • Giving away your power. We cannot treat doctors like gods. They may be experts on a medical condition—then again, they may not be—but we are experts on our lives. Don’t be afraid to ask for more help or a second opinion. Check what you learn from the doctor with what you learn from books, Internet forums, or support groups. Clip or download relevant articles and share them with your doctor.

    The point is not to be an adversary. We don’t want a tense relationship. But we don’t want to be pushovers, either. To quote Mleafrn one last time, “We have a right to respectful care. If any health-care provider is rude or condescending, I would likely tell them I don’t want them taking care of me or my family.”

  • Not seeing doctors as people. We want to be treated with respect, so we should treat doctors as whole people, not as brains with stethoscopes attached, as I wrote in The Art of Getting Well. It’s a good idea to ask about family pictures or other personal things you see in their offices. Take an interest in them, and they will be more likely to see you as a whole person.

What about you? What techniques or attitudes have worked in your relationships with doctors? What hasn’t worked? Please share your experiences by commenting here.

Here are a couple of good Web resources on communicating with doctors:

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Comments
  1. The day before I go to the doctor, I fill out a form I have devised on my computer. First is a list of the medications I take, with dosages and what they are for. On the back of that I print a list of my allergies and intolerances to medications, foods, and chemical/environmental sensitivities.
    The next page is my medical history, broken down by Diseases/conditions, Injuries, Surgeries/procedures. Within each category things are listed with the date, with the latest first.
    The last page is Current Problems, where I describe what’s going on that the doctor needs to know about. This is where I ask my questions.
    I give the doctor a printout and keep a copy for myself in my planner on which I make notes of blood pressure and other readings that day, any test results or other reports the doctor gives me, and the gist of our discussion, as well as any instructions.
    If I make a new appointment, I add that to my notes.
    This is also very helpful when going for a first appointment with a new doctor. Just about anything I need to fill out the forms they give me is in my copy.
    I name each computer file with the doctor’s last name and the appointment date, so it’s easy to find in my “Medical” computer folder. If I need to see my notes, I can refer to that date in my planner.
    I started doing this because of my “fibro-fog,” the forgetfulness that is part of fibromyalgia territory. This way I know everything will be covered. All the doctors I have seen have been pleased with this as I am.
    I print a planner size copy of my meds, allergies, and medical history to keep in the front of my planner. This has been very helpful on trips to the emergency room.
    I also keep in my planner a page for the ABCs and other test results (A1C, Blood Pressure, Cholesterol and related tests).

    Posted by delebra |
  2. I think the points presented in this article are excellent. Perhaps the author could give advice on what to do when a patient asks the doctor for a second opinion and that request is denied. I’ve asked my doctor for a referral to an endocrinologist and was denied - twice. He said to me, “an endocrinologist is not going to tell you anything different than I’ve told you.” This is the same doctor who diagnosed me as type 2 diabetic and then wrote in my chart that I was turning into a type 1.

    Mayumi

    Posted by Mayumi |
  3. In the blog Posted by: delebra | Oct 02, 2008 10:55 AM

    I was wondering if you could sent me a blank copy of your form as I too have a fog for all the medications I take and I think this would help me allot. You can e-mail me at jfortier@mts.net

    Thank you,
    Janet

    Posted by jfortier |
  4. Delebra, all your strategies sound very good, and I hope others will follow your example. It’s inspiring how people can self-manage memory and thinking problems. So many people are crippled by thinking issues and don’t realize they can help themselves. The things you are doing are just like using a cane or a walker to get around, only better, because they help your doctors remember, too.

    Mayumi, it sounds like you may have to fight for your rights. I gather your primary doctor has to agree before you can see an endocrinologist. Probably, he gets paid more if he does fewer referrals.

    You should review the terms of your insurance contract and see what the rules are. There must be somebody you can appeal to within the system. If not, your state probably has an office for health insurance problems. Most states do.

    It is possible an endo would have more up-to-date knowledge of diabetes treatments. But it is also possible that an endo would tell you pretty much what your GP told you. But you do have a right to a second opinion.
    Good luck with this,
    David

    Posted by David Spero RN |
  5. In the blog Posted by: delebra | Oct 02, 2008 10:55 AM

    Your system does sound really helpful. If possible, I would also appreciate a blank email copy of your medical form. jet1953@gmail.com Thank you so much!

    Posted by jet |
  6. I, too, would be interested in an emailed copy of delebra’s forms. I’ve wanted to do something similar for a long time but couldn’t quite figure out how to start. If it could be in a Word format, that would be very helpful since I don’t have any “fancy” software on my computer. I have kept a log since I was first diagnosed as a Type 2 in a 3-ring binder. It includes date, time, a.m. glucose number, BP/Pulse, insulin units, meds taken (or not-shown with a simple hyphen)and a “Comments” section where I record anything unusual from that day and what I ate that evening in case it impacts the BG number the next morning. It’s very simple compared to delebra’s record, but my doctor seems to appreciate the info and actually reads it! Thank you in advance for sharing your forms, if you can. My email is mcilv@att.net.

    Posted by patmack |
  7. Delebra, I have my basic information together, but I like what you have going for yourself and think it is what I also need to bring everything into one order. Will you please share your forms with me also. All your information has been helpful, thank you!

    Posted by Vicki |

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