Musings of a Marfan Mom

Being an Empowered Patient

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I’ve been thinking a lot about doctors these past few weeks.  I’ve had problems with a couple of them recently, particularly my pain doctor.  Her nurse doesn’t return calls for days, is sarcastic, and the doctor herself is unavailable and assumes I’m a drug addict (or at least that is the impression that I get).  I could suck it up, I could fire her and try to find a new doctor, or I could address the issues head on.  I think too often patients do the first, when they should try option #3.

So, these are my tips for being an empowered patient, which I think are applicable to everyone and not just us “professional patients.”

1)    Know the purpose of your visit ahead of time. This might seem really basic, but the more direct you can be, the better.  Don’t just say you’re sick, or you’re in pain: let the scheduler know what hurts and for how long.  Having this information will tell the scheduler know how urgent your case is and help you get in more quickly.

2)    Type out your relevant history and bring it with you. I have done this for two of Mark’s appointments – when he had pneumonia and when he was diagnosed with Type 1 diabetes – and both times received very positive comments from the doctors.  Each time the paper I prepared was no longer than a half a page.  I listed his medications, surgeries, and a timeline for his symptoms.  I brought a copy for the nurse and a copy for the doctor.  This ensured we wouldn’t forget anything important and they had a hardcopy of everything that we’d discussed so they wouldn’t forget, either.

3)    Write out any questions ahead of time. It’s (usually) not that they’re jerks: insurance companies mandate how much time a doctor can spend with a patient.  Depending on the practice and insurance company, that ranges from 2-5 minutes.  You have a responsibility to be as concise as possible to get the most out of your appointment.

4)    Know your illness inside and out. This is mostly applicable to those with chronic illnesses.  Doctors cover a ton of information in medical school and it’s not fair to expect them to be an expert in whatever you have just because you walk in their office.  [It is TOTALLY reasonable to expect they will work to educate themselves.]  If you’re up on the latest treatments you’ll be better able to advocate for yourself.  Along those lines, get connected with those who ARE experts (such as checking for a national foundation).

5)    Stand up for yourself. If you don’t understand something the doctor said, ask for clarification.  If you’re not happy with how you’re being treated, say so (respectfully).  Just be sure that you are clear with what the problem is and what you want to see changed.  Once in college I was really frustrated with a new cardiologist.  After a totally preventable night in the ER, I met with him and, without raising my voice, said something to the effect of “I think you’ve forgotten that I am someone’s daughter, sister, friend, and girlfriend.  I know my illness better than most doctors, and I insist that I be spoken to like an adult.  You have not kept me in the loop and that resulted in me going to the ER.  This is not acceptable.” This resulted in him yelling, “I am the doctor and you are the patient and you will do what I say!” Hey, I was able to quickly figure out that we weren’t compatible.  No more wasted time.  On the flip side, I’ve twice had problems with nurses not allowing me to talk to the doctor/not delivering messages.  Once I alerted the doctors to this (I looked up their email addresses on the university websites), they spoke with their nurses and provided me with alternate ways to reach them.  Problems solved.

6)    Finally, when all else fails, fire your doctor and move on. You are paying her and having a poor relationship with your doctor can negatively impact your health, both in terms of the stress it causes you and the wrong treatments you’re receiving/beneficial treatments you’re missing out on.

You can bet I’ll be utilizing some of these when I meet with my pain doctor again this week.  I hope I don’t need to use the last one.

Do you have other tips to share, or stories of how you’ve used some of these suggestions yourself?

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9 Comments

  1. Really good post. Patients need to be their own health advocates, and as a consumer in the health care industry, it’s no different than dealing with bad customer service from your dry cleaners!

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  2. Really excellent info! I’ve just reTweeted it to all my moms-to-be on bed rest due to high-risk pregnancy. It can be tough sometimes to get the nurses and docs to listen to what we have to say. Your recommendations will help bridge that gap!

    If any of your readers are pregnant, they may be interested in these scripts for how to best describe their symptoms to their OBs: http://www.keepemcookin.com/talk.aspx It can help women and their doctors to recognize the difference between “normal” pregnancy symptoms and symptoms of something more serious, like preterm labor.

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  3. You know how many bad doctors I met on my way to a diagnosis. I tried reasoning, and was told to go to hell…
    My current doctor is pretty nice. She sometimes takes the attitude of “Yep, you have a chronic illness that causes lots of pain and problems…what do you want me to do about it?” but she’s pretty good otherwise.
    Never take a doctors word on something that makes you uncomfortable. If I had, I’d be walking around undiagnosed.

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  4. Great post Maya! Lots of really great information everyone needs. I have a child with ADHD and have found everything you’ve mentioned to be true, especially number 5. Since my child can’t stand up for himself, I must do it for him. I am his only advocate and I must be proactive when it comes to his medical care. Thanks for this really great post. I’ve already RT’d over Twitter. :)

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  5. It’s true – you know your body better than anyone. You may sound paranoid, but there very well may be something there – happened twice to my mom. Docs refused to test her, but she kept pushing, and then found that she had a ruptured aorta.

    We were given instincts for a reason, but in this culture we were taught that the doc knows everything. We have to unlearn that.

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  6. This is a really well thought out and written post. I had a really rough pregnancy, and twice diagnosed what was wrong with me, and the doctor looked up my proposed diagnoses (hyperemis gravidarum & pubis symphasis disorder) before confirming that I was right! And this only after a few visits where he kept telling me there was nothing wrong with me. I ended up in hospital for four days with severe dehydration. I firmly believe that doctors serve a purpose, but that we have responsibility for our own health.

    Great post again!

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  7. This is really a great post. And from the perspective of a non-physician medical professional, you gave great advice. I love love love it when my patients know what they want and let me know in a clear way. It helps the appointment be prioritized how the patient wants and helps it move along so that neither of us are wasting time. I really appreciate when patients come in with questions, a history, and are knowledgeable. It makes me want to help them more because they are already helping themselves.

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  8. This is a fantastic post. It is so important to be your own advocate. There is nothing more valuable than having a doctor that will listen to you.

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  9. Really great post. I think point 5 is so critical and an important thing for all of us to remember. This is our body and we have a right to be treated in a manner that makes us feel comfortable and secure. I don’t care how many times you have to go, the hospital can be a very scary place and you have a right to force your medical providers to respect you and do what is needed to put you at ease.

    I think Kristi’s point is a good one – it is important to empower those around you to be your advocate because you can’t always be your own.

    I guess the only thing I would add is that the responsibility for “getting better” rests with BOTH you and your doctor. I have a friend who, when I visited her in the hospital, told me that she was glad her doctors were going to make her better. I don’t believe the path of passivity that she chose is the best choice. From my experience, I feel pretty strongly that the best medical outcomes are only possible when both parties are equally committed to finding the right solution.

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