How Much Does Patient Testimony Matter?

A story about patient testimony

In this blog, I’m going do something I don’t often do: use personal patient testimony to illustrate a point.

How much does patient testimony matterToday, I took my teenage son to a new ear, nose, and throat (ENT) doctor. My son’s ENT history was interesting to the doctor.  Reliving the story today was poignant.

As an infant, my son suffered from apnea, failure to grow, and an enlarged heart. At twelve months of age, he still could not stand. We stayed with him whenever he slept because he would stop breathing and turn blue.

Over the months, I took him to several pediatricians who refused to refer him to an ENT. Instead of listening as I described his symptoms, every doctor jumped to a different conclusion. My son had numerous misdiagnoses and a trip to the emergency room. Repeatedly, I was accused of exaggerating his symptoms. They actually said, “He does not look sick.”

As a young mom, I felt powerless and had little wisdom about how to navigate medical systems. One day when I insisted that my baby needed an ENT, I was told, “No ENT would see you. He does not need a specialist.” I still remember looking through my tears at him sitting at his desk. Something changed in me. I went home and called a pediatric ENT doctor who had seen my daughter two years earlier when she lost her hearing.

It was a busy university hospital, but at my word, she fit my son in the next day. The doctor knew immediately what was wrong with my baby and promptly admitted him to the hospital for surgery. That night I watched the monitors as his oxygen saturation levels dipped to the 50’s. That blessed doctor operated on my son early the next morning. He had an adenoid tumor that blocked his airway 98%. Every symptom had pointed to that fact.

I stayed in his hospital room with him for a week while his oxygen saturation levels improved daily. That lady ENT saved my son’s life and never charged me a dime. The hospital wrote off the entire procedure.

Two things stay with me: a deep respect for doctors who care for patients and equal disgust for those who work in medicine and ignore patient testimony.

If my son had died, we would have been told it was due to SIDS (sudden infant death syndrome). However, the real cause would have been a lack of attention to patient testimony – in this case by proxy of parent. Can we call that LAPT?

2 things: deep respect for drs who care & equal disgust for ignoring patient testimony #meded Click To Tweet

My only point about patient testimony

Unfortunately, there are many more examples of discounting patient testimony in my own family. In fact, there are examples with greater consequences than in this example. Rheumatoid Arthritis patients have also shared stories on this blog that illustrate a lack of credence to patient testimony.

So what does all that prove? Anecdotal evidence proves nothing. My only point is that patient testimony is of inestimable value. It is ignored at the peril of all.

My son? Today I bought him a new Boy Scout uniform – adult sized.

Next time, we’ll take a less personal look at patient testimony

How much is the patient’s testimony taken into account by medical researchers, doctors, or government safety regulators?  Would Relying on Patient Generated Data Make a Difference?

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

19 thoughts on “How Much Does Patient Testimony Matter?

  • April 15, 2010 at 7:29 am
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    I have never been wrong when I’ve disagreed with a GP…EVER! My Rheumy tells me to keep those GPs honest!

    Reply
    • April 17, 2010 at 2:44 pm
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      Hmmm. I think we can say the same thing. I was always proven right. Never thought of it that way. Is that a good thing?

      Reply
  • April 15, 2010 at 9:14 am
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    my doctor also neglects my symptoms..
    i m telling n he says with a smile”nothing to worry”
    bt i m not worrying ,rather i m telling him my probs which makes me feels sick…….n demanding a solution…..which i think even he doesnt have…..

    Reply
  • April 15, 2010 at 10:06 am
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    Morning Kelly: I like this post a lot. Good for you for going with your gut instinct and pulling your own rabbit out of a hat to save your son.

    Like the use of the word testimony. I think of it in the legal sense and would sign or say any oath they wanted that what I’m saying is true.

    Yesterday I had to make the dreaded ER visit for pain. I was out of my mind with it, an abcess (that I’m on Amoxicillin for) my knotted muscles and my RA trying to flare through my combo of meds.

    While the nurse was the “I’d be so much tougher than you” type and her sister has really bad RA, I lucked out on the doc (and didn’t smack the nurse ’cause I was too tired to lift my arm :-X ). He was older, listened to what has happened to me in the last several months and provided some much needed relief. Got two infusions of morphine/valium, as he said, to try to break the cycle and get my other pain and muscle meds working again. I had about 6 hours of relief and now will get back on the muscle relaxers again to try to keep up with what the Valium started.

    He listened, he didn’t judge, he acted promptly and I laid there and bawled, just because he believed me.

    Question for anyone who reads this: I’ve been on Humira/Arava since last Sept. I’ve been so sick lately it seems like I’m getting weird reactions to my last 2 injections. While I’m always a little weirded out for the first couple days after my shot, I’m starting to get really sick from them. Burning skin, like I was dipped in acid, more pain than before the shot, weak and dizzy, stomach pain, also a large blood blister on my gum and an abscess that I’m not sure is from a tooth.

    Has anyone else gone through something like this? Maybe I’m just truly worn out. It just seems so late for side effects to show up.

    Will be calling Mayo, but wanted to know if it’s happened to anyone else. Thanks for sharing if you have any experience with it.

    Reply
  • April 15, 2010 at 1:55 pm
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    Good for you Kelly for listening to your mother’s instinct and doing the right thing. I realized just yesterday that when something is outside of the realm of a doctor’s specialty, they tend not to really hear what you’re saying. When my twins were babies, Alana had several episodes where she seemed to stop breathing for a minute and her lips would turn blue. We made several trips to the ER and every time her O2 saturation was fine. When calling to make the 4th appointment for this issue at the pediatrician’s office, I asked for the doctor that was my husband’s pediatrician when he was a child. As soon as I described what was going on with Alana, he said “it’s reflux”. I didn’t understand it, but when we started giving her Zantac, it stopped happening. After an experience 2 years later with a stomach virus, we learned that she was having vaso-vagal reactions to the reflux in her esophagus.

    Yesterday, this same pediatrician acted like I was insane to be having Alana screened for Asperger’s Syndrome. Her daycare teachers, my SIL (a recreational therapist who works daily with individuals on the autism spectrum), a therapist, my husband, and myself ALL see the indicators of it, but because he doesn’t see it in the 10 minutes he sees her during an appointment, we all must be wrong. 🙄

    Sorry to have gone on and on, but after that experience yesterday, your post really struck a chord with me! Wonderful post, as usual!

    Reply
    • April 17, 2010 at 2:49 pm
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      Aubrey, Why some drs assume we are doing it “for attention” for them? That must be rare to do since I’ve never met anyone who did…

      Reply
      • April 18, 2010 at 9:21 am
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        I’m not trying to hijack your post, but wanted to let you know that Hubby and I felt totally vindicated after Alana’s appointment Friday with a psychiatrist who said she totally understands our concern as a lot of her behaviors are very consistent with an Asperger’s diagnosis. I know this has nothing to do with RA (other than the stress causing my flare to worsen) but I wanted to give you an update. :heh:

        Reply
  • April 15, 2010 at 3:19 pm
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    Wow, how appropriate. I just came back from my new rheumy’s appointment. How fun! I told him all my symptoms, how much pain I was in, how I just can’t go on like this anymore. How my thumbs are just constantly hurting, how I wake up in the middle of the night in pain because I “moved” and how every time after sitting at my desk for 30 minutes I can hardly walk. I don’t exercise anymore, I don’t do anything but go to work, go home and sit on the couch the rest of the night. He listened, digested the information and then told me that I don’t have RA and that all the symptoms point to osteoarthritis, but we’ll take some xrays to compare to last years and see if anything turns up, maybe I’ll get a letter from him in the mail regarding the results. But all my labs are normal (I’m on Humira, methotrexate) so there’s nothing wrong with me. He won’t even give me better pain meds because….he doesn’t know what I have. I was and still am in shock and now very, very angry. Basically I’ve been seeing him for the past 6 months and “IT” just keeps getting worse and worse and worse. I can barely hold a pen or type! This is my third RA doctor….my first I didn’t feel was aggressive enough, the second moved and now him. What do you do? Honestly? I don’t know if my insurance will let me switch and would you switch to someone in the same group and be labeled as the troublemaker? Go back to the non-aggressive doctor? Hope that it’s not RA and every doctor I’ve seen has misdiagnosed me? He’s taken me off the Humira, I don’t know why he’s keeping me on the methotrexate if he truly believes that I don’t have RA.

    Reply
    • April 17, 2010 at 3:00 pm
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      Lynn, I wish I could say I had answers to this. It seems like many of us struggle with similar issues. You are the 5th person to tell me that story in the last few weeks. You know the labs can be “improved” by the treatments, right? Some say that after diagnosis & treatment, the Rf test is really not a meaningful help. Look at this post & the comments – one is by a dr. If you decide you cannot trust this dr, you might have to find another one. I know that is hard.

      Reply
      • April 21, 2010 at 10:36 am
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        Thanks Kelly! I did read that information earlier, and thought that perhaps the RA doctor would take into account my symtoms and not my labs. My test results did come back, positive for RA and osteoarthritis and he actually called me with the results. I guess I’m just venting now because then he sent me all the brochures for RA meds and asked me to pick out which one I wanted to try. When I decided on one, I left a message for him and asked what he thought. Course, his was response was “I gave you the brochures so that you could decide on what drug you want to take next” so basically he’s disengaged from my treatment plan? I think it’s time to move on to a new and hopefully improved RA doctor.

        Reply
  • April 16, 2010 at 10:02 am
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    I too have a child who is a medical marvel. he was born with Spina Bifida and the docs said it was a very low case almost to the point of non exsistance.. with a hole in his back and lack of urination and eating i pushed and pushed and pushed he has tethered cord syndrome was also very spastic almost half a baby his legs were so bound up. I pushed for a neuro surgeon who fixed my son for the first time at 6 weeks old.. the damage of his spinal cord was so that he cannot go potty without catheters and for poop well i wont go there… they told me he would never walk.. He does walk he worked hard i worked hard got him all the things i could find and did hours of pt a day. He walks without aids and most can tell hes got a slight gait problem but it works for us.. he has lost feeling in his legs fom nerve damage but still can walk..Had i listened to the docs and not my heart he would have been paralized from the chest down in a matter of weeks.. hes had multiple surgeries to fix issues with his spinal cord which tethered again due to scar tissues and bladder and kidney and intestine surgeries but hes a wonderful kid who takes it all in stride.. I cannot CANNOT post enough about being your own advocate ALWAYS!!! you MUST push thru and scream if you must…

    Reply
  • April 16, 2010 at 10:32 am
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    I am very sorry that you had to go through that with your child. Doctors do not always listen to young mothers as they think we would just be over reacting. I had the same issues with my son and seizures. He is not a healthly happy 26 year old.

    To young mothers out there: Make the the doctor listen to you. You are the voice of your child. You know your child better than anyone!

    Take care,
    Ina

    Reply
  • April 28, 2010 at 11:09 pm
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    Not much at all. I wish your story was unusual or rare but it’s just not. I have sat in so many doctors offices furious that I was wasting my time, furious that I was being ignored, dismissed, and patronized. I sat there thinking, “Why in Hades are you a doctor when you are so very lacking in compassion and empathy?”

    My DH had 3 conditions that were ignored by his doctor. I paid attention to his symptoms and each time, I was right about what was going on. I just took listening to him, asking questions, and then putting it together in the most logical answer (he has celiac disease, dermatitis herpitiformis–a kind of celiac disease of the skin w/ a rash, and thin membrane disease (kidney). It wasn’t hard but it took time to listen to him and ask the right questions. Maybe that’s the problem, Kelly–not wanting to listen and not asking the right questions.

    I’ve almost given up on doctors; they are a necessary evil. I hate to malign them like that but I really believe about 85% of them need to be in another profession.

    Reply
  • Pingback: The Unwilling E-Patient: Learning to use my mother-of-a-patient voice | e-Patients.net

  • November 8, 2014 at 12:25 am
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    I used to work at a multidisciplinary rehabilitation clinic. The head nurse had a favorite saying she used to tell the doctors and they never dared to disagree with her: “When all else fails, listen to the patient!”

    Reply
  • March 18, 2017 at 4:06 pm
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    Kelly, I am hoping and waiting for the day when you can write a book on all that you have experienced and have learned through all the tough times in your life –and in the lives of your loved ones, and our loved ones! We know only too well how often doctors do not listen to patients (or their parents or kin) when symptoms etc are described. I hope that one day our children and our grandchildren, and their children, will not ever have to go through what you and so many of your Warriors have gone through. If you ever get to start a book, we will help you in as many ways as we can!! In the meantime, one issue at a time…..Thank you for sharing and for letting the rest of us learn so much from you and from each other!! Hugs!!!

    Reply
  • March 19, 2017 at 1:30 am
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    I’ve been through this many, many times. I’ve had really strange, sometimes rare medical problems since I was a very small child. I’ve been patronized, dismissed, told it was all in my head, misdiagnosed, and in some cases not diagnosed at all. I’ve had times where I felt so humiliated and hopeless I didn’t know what to do next. I’ve had some really awful doctors, and some really good ones. The good ones LISTENED, took me at my word, and didn’t give up on mope when they couldn’t figure things out. In my mind, patient testimony is the single most important tool a doctor has to be able to accurately diagnose and treat the patient. Without it, it’s very difficult to even know what tests to order. I’m a nurse, and I can tell you the vast majority of patients know when something’s not right. We know our bodies better than anyone else, and we know what is/isn’t normal for us. The issue is twofold. 1) As patients we need to be as detailed as possible when talking our doctors and telling them our symptoms and history, and advocate for ourselves when we feel we’re not being heard 2) Our doctors need to listen carefully to what we’re saying, take us at our word, and not give up on us when they’ve ruled out the common diseases, and be willing to refer us elsewhere if they can’t figure it out, It’s been a long hard road, but I’m blessed to have good doctors now, who listen and take me seriously. I thank God for my stubborn streak that wouldn’t let me give up, and wouldn’t let me just sit back and take it when I was ignored or mistreated by doctors!

    Reply

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