When patients feel trapped by doctors and the medical system

When patients feel trapped by doctors and the medical systemWhen patients feel trapped by doctors and the medical system

An excerpt from When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary TestsWhen patients feel trapped by doctors and the medical system.

Danielle is a 20-year old college student at the New England Conservatory. She came to the ER because of a headache. When she woke up this morning, her head hurt badly. Her mouth was dry, and when she tried to get up to go to the bathroom, she felt like she was getting faint.

She attributed all of this to drinking too much the night before—normally she has one or two drinks when she’s out with friends; last night, it was her roommate’s birthday, and she did three or four shots and had a few beers on top of that.

“The last time I had a hangover was a couple of years ago, and I think this was how I felt then,” she says. “My roommate Jackie told me to drink lots of water.”

Throughout the day, she felt too nauseous to eat or drink. When the headache didn’t go away in the afternoon, she called her mother. She doesn’t have a doctor in Boston because she doesn’t have any other medical problems and still gets her yearly check-ups over the summer when she’s back home. Her mom convinced her to go to the ER to make sure everything was OK.

Every provider who saw the Danielle knew exactly what she had: a hangover headache. She received some IV fluids and was texting away on her phone. However, her doctors were following a “pathway”, a cookbook recipe for what happens when someone comes in with a headache—they needed to “rule out” a bleeding in her brain. Danielle got ordered for a CAT scan of her head. It was negative.

This was good news—or was it? Soon, she was being told that she needed to stay for a lumbar puncture: a spinal tap. The doctors began pulling out needles to put into her back. At some point, she excused herself to go to the bathroom. That was the last time she was seen: as far as we can tell, she escaped out the window of the bathroom. She left all of her clothes and shoes, and ran out in her hospital gown.

All of us can sympathize with Danielle. She was young and scared, and she didn’t want a procedure that she didn’t really need. Instead of a rational discussion with her doctors where she could make sure her story was heard and ask about the risks and benefits of testing, Danielle felt forced into doing something she didn’t want to do. She felt trapped—literally—by the doctors and nurses, by the hospital, and by the medical system.

We do not believe such an approach is conducive to good patient care. We believe in a partnership approach where decisions are made together, not simply based on worst-case thinking or mindless adherence to a depersonalized recipe. Danielle’s story is unfortunately far too common. We hear it every day single day, and we write our book to help Danielle and patients her so that they do not have to feel trapped–but are rather empowered–to take control of their healthcare.

This book is for our patients, to help to empower you to better care. This is help you take control of your health, to make sure that you get the best care possible and avoid misdiagnoses and unnecessary tests.

Leana Wen is an emergency physician who blogs at The Doctor is Listening. She is the co-author of When Doctors Don’t Listen: How to Prevent Misdiagnosis and Unnecessary Tests.  She can also be reached on Twitter @drleanawen.

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  • dianalane

    Patients need to be informed that their informed consent is required for care.
    Danielle could have declined any procedure she objected to at any time and left AMA. There’s no need to climb out a window.

    • http://twitter.com/RHR_Chat RHR_Chat

      I understand the author’s general point about the need for a two-way dialogue. But this example (Danielle’s case) is not a good example.

      I am not convinced that any physician (or any other medical care provider) could have engaged Danielle in a meaningful discussion about her diagnostic or treatment options. The behavior of escaping like a prisoner out of a bathroom window is peculiar at best.

      How does a physician know whether they are dealing with (1) a patient who may seemingly concur with the treatment plan (only to escape out of a bathroom window), (2) a patient who is overwhelmed and confused and (3) a patient who is onboard with the proposed treatment plan?

      • ninguem

        “All of us can sympathize with Danielle.”

        Empathize, not sure if I can sympathize. She drank an impressive amount of alcohol, and I thought I could tie one on in college.

        I’ve had hangovers. I’ve had gawdawful headaches.

        Here’s where we part ways. certainly by college years, Unlike Bill Clinton, d@mn right I inhaled. And imbibed. I knew full well what a hangover was about. I would not have dreamed of calling mommy, knowing she’s tell me…..you g@ddam deserve the headache ya dumb sh!t…….if you knew my mother, that would be a direct quote……and I would not have dreamed of going to a ER with that.

      • f. lusu

        Danielle called mom for reassurance but ends up in the ER. she still feels nauseated and becomes overwhelmed by whats going on. she feels invisible. they should have taken a few more minutes to ask more questions and give her options to choose from. one of which was sitting for awhile to see if she feels better. that never happened. she feels better,but thinks (1)-something might be wrong (2)- the dr.s have no clue and are covering all the bases with tests (3)- she hasn’t been informed of any options so she made one for herself and dives out the window-was she on any drugs,because what girl would leave without her purse and her clothes

  • http://www.facebook.com/shirie.leng Shirie Leng

    Fantastic! Would love to read your book. My blog, Medicineforreal,wordpress.com deals with the very same issues. I have both seen it and experienced it, as a doctor and as a patient. The cookbook, protocol approach to medicine is good for neither of us.

  • ninguem

    Do I understand this correctly? A 20-year-old college student is in a hospital ER with a hangover? She had to call her mommy for advice?

    And mommy didn’t tell her “serves you right”……..with some advice not to drink so much, and how much am I paying so you can go to college and get drunk….?

    And this little girl’s take-home lesson is, something bad about American medicine, but not “don’t get plastered, it’s not good for you”….?

    • http://womanfoodshinyobjects.wordpress.com/ Brian Stephens MD

      I think this book is capitolizing on the commercially popular view that “we nasty doctors” are the major problem with poor care in this country.
      forget the fact the the payment system in healthcare is the REAL reason we have a “hearing” problem in the exam rooms.

  • hth

    While the example may not be the best, these things happen. My (admittedly stubborn) 85 year old father had never been to a doctor until he suffered repeated bouts of nosebleeds and one that did not stop. He was, not surprising,diagnosed with high blood pressure. This was found to be caused by kidney failure. He was put on dialysis, which he hated but felt he could not complain to the doctors who, of course, were trying to help him. No one asked him if this was what he wanted. He deteriorated and ended up with a bowel blockage, which was removed. He spent 3 weeks in the hospital and hated that as well and expressed a wish to be left to die. He wanted to leave the hospital but medical staff felt he still had a blockage somewhere and wanted to do exploratory surgery. My mother (also elderly, of course) felt this was inevitable. When I questioned whether Dad really wanted to do this and had anyone given him a choice, Mom got quiet and said no. I asked that this happen. Dad refused the operation and went home. He was given 3 weeks to live. Finally, empowered to make his own choices, he chose to discontinue dialysis. He recovered from the surgery at home and lived 5 months without dialysis, months that were much happier for him than the aggressive treatment of an 85 year old fellow who had been fiercely independent his entire life. I know everyone was trying to help and keep him alive but feel no one in the health care system dared to bring up the conversation of whether or not aggressive treatment was appropriate and wanted for this individual. I understand that this is difficult. It was difficult for me as a daughter – how much more for a stranger to suggest that a person has a choice to perhaps die sooner, albeit possibly better, by letting nature take its course – or maybe eke out a few more months but with treatment that would appear border on torture to some. It is difficult to anticipate how this type of conversation will be received and viewed by a patient (and their family) because every person is so unique. Still, at times, it needs to be done.

  • petromccrum

    In my experience this is typical ER over testing. ER doctors want to perform every test they possibly can. Is it inexperience or to be able to charge more? My last ER visit I also walked out and still got a bill for $1300.00. ridiculous!!

  • Vladimir Ross

    At least she got out before they abused her by unwanted “examinations” of her lower regions and breasts. Which would have been on the agenda before long.

    Well done Daniella

  • http://twitter.com/bostongal1641 bostonmeg

    First of all I routinely drank a lot more than this when I was younger and know all too well the “hangover headache”. I now have a daughter who is just out of college and had she called me to complain about a headache after a bout of drinking I would have told her the time honored treatment – grease & salt (generally Chinese Food), lots of water and rest. Having had a lot of experience with ER’s due to complications after intestinal surgery and had ER Dr’s who do not include you in the treatment plan (very often they are just too short on time) I am sure that once she got there, had an IV which her made her feel better that she panicked. Climbing out a bathroom window without clothes or her purse seems odd to me as does the spinal tap for a headache unless the IV did not resolve the headache and there happened to be Meningitis occurring at the time in College communities. Bottom line is don’t go to the ER if it’s not a life or death emergency – they are not Primary Care Dr’s & shouldn’t be expected to act like one.

    • ninguem

      I hope you added that maybe it would be a good idea not to drink so much in the future.

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