it’s supposed to be a “doctor-patient” not “doctor-disease” relationship

This blog post was included inGrand Rounds: Medical Education hosted by Dr. Elaine Schattner at Medical Lessons.”

This post was included in the Patients for a Moment blog carnival: advice for medical students/professionals hosted by Rachael at “Glass of Win.”

My last post, “what your doctor couldn’t tell you” was directed towards newly diagnosed patients. In it, I tried to outline some key things – additional “side effects” – about life with a chronic illness that I wish my doctor could have told me about. As I was writing that post, I started thinking about WHY my doctor couldn’t tell me these things. I realize that a lot of it is stuff that you have to experience, but shouldn’t a doctor treating a number of chronic disease patients be aware that many of his/her patients are experiencing those things? I think this comes down to an inherent conceptual question: is my doctor treating ME or is my doctor treating my diagnosis? I guess a question that really plays into that is this: which was my doctor taught to do?

A medical education is largely focused on the obviously important science. This means how the body functions, the pathology of diseases, and how the medications work. Medical knowledge has increased, but the time frame of medical school hasn’t. We just keep cramming more and more information into students in the same amount of time. It stands to reason, then, that other things have been necessarily excluded. As an MPH student, one of my majors was bioethics. I was lucky enough to have an amazing professor – one who also taught the medical school ethics classes. One of his biggest complaints was that the medical students, in his opinion, “just don’t care [about his class], because the material won’t be tested on exams.”

I have asked medical students, and they tell me that they are taught how to communicate with patients. How to empathize (a concept that I will have to table for another post),  which questions to ask in order to elicit the most information from their patients and so on. I’ve been told that some schools bring in patients to talk about their experiences – but that many students skip those sessions. I guess you can try to teach these things, but it doesn’t do much good if the students can’t be bothered to care (or just don’t have the time to). This shift in focus is visible outside of the schools too. We have increased the ability of a doctor to work “reasonable” hours (debateable, of course) and to have a private life. Gone are the days of house calls and midnight phone calls at home. Doctor-patient relationships are now restricted to the walls of medical institutions.

So where does this leave the patients? It can be argued that our treatments are better. Well, unless you have lupus like I do, in which case treatments haven’t really changed in a very long time. Still, given that it’s a complicated illness, I’m glad that my doctor understands all the science behind it. The thing is, my illness extends far beyond the symptoms laid out in the medical textbooks. It extends into every aspect of my life. As do the side effects of the prescriptions used to treat it. I fight this illness every day. It can take away a lot of things in my life: my hobbies, my life goals – and my life possibilities, my friends, my time, my energy … I’ll stop listing now, because I have other points to make. I’m sure you get the picture. In fact, my illness takes away much of what fills most people’s lives. This, I’m sure you can imagine, opens up a distinct road towards depression.

So I ask you: how can a doctor ignore these things? How can a medical student be allowed to skip the patient experience lectures? How can doctors be trained in a system that has them so stressed out about the science exams that they can’t bother with the ethics? I’m sure, if you are part of that field, you are wondering why I feel I am qualified to comment on this issue. I suppose I’m not – from an institutional persespective. Still, let me remind you of this: doctors exist in order to treat patients. Patients. Not diseases. It is, after all, a “doctor-patient” not “doctor-disease” relationship.

I know that doctors are pressed for time. I know that they must feel that they need to focus on the most important part of the illness to tell me about. The problem is, what they consider unimportant and not worth discussing is the part of my illness that is forefront in my experience and in my life. The questions about “impact of illness” are supposed to be part of a routine medical history .. and so they are: they are routinely skipped. By neglecting to discuss the impacts my illness has on my life, my doctor is being negligent as far as I’m concerned. My doctor is failing to inform me about the impacts of my disease. Any doctor that has treated me this way has not treated me again.

Here is what I fear to be at the root of this problem: does my doctor even know that these issues are issues? Has my doctor ever really taken the time to find out what life is like for chronic illness sufferers of diseases like lupus?

The medical education system needs to remember it’s roots – and the role of the professionals it is training. We are patients. We are not just a diagnosis for you to publish articles about and discuss at your next grand rounds. We exist outside of your clinics … your hospitals … your exam rooms. Our illnesses exist outside of them too. Why aren’t there exams to find out if students are learning that? Why isn’t there more focus on the humanitarian side of a doctor’s role?

Patients aren’t delusional. We know that the amount of time the doctors on Scrubs or Grey’s Anatomy have to interact with their patients is completely unrealistic. We aren’t asking you to spend you days off discussing our lives with us. We are just asking doctors to remember that their textbooks don’t cover a major aspect of our illnesses. We are asking professors to remember that they shouldn’t limit their explanation of illness X to it’s pathology. The patient life impact of the disease shouldn’t be relegated to the “if there’s time” slides tacked-on at the end of the PowerPoint file. Don’t make it okay for students to ignore the patient-lecture series. Don’t test only the science. How are doctors treat us today may or may not be alterable, but the next generation of doctors is currently in schools. They are still being trained. The science of medicine may have changed, but the reason doctors exist hasn’t. It’s not a question of can regain the doctor-patient relationship. It’s a question of do we want to.

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12 Comments

Filed under blog carnivals/grand rounds, introspection

12 responses to “it’s supposed to be a “doctor-patient” not “doctor-disease” relationship

  1. I have 2 of those rare types of doctors (rheumatologist and neurologist) who actually take the time to explain each and every single aspect of what is going on with my body at the moment, answer my questions and make sure that I understand what they are telling me and why we are going through with the treatment that we are going through with.

    My rheumatologist actually works from home when he is not in the office. He labels my bloodwork ordered as critical and requests that it be done asap. I get all bloodwork results back within 24-48 hours with a phone call to let me know the outcome and whether or not I can taper my steroids, remain on the same dosage, or increase the dosage.

    My doctors are phenomenal! I DO know, however, that this is extremely rare and I am one very lucky person to have this sort of medical treatment! It has taken 10 years to find the team of doctors that I have, and most people never have such luck.

    Everyone move to FL and get hooked up with my doctors 🙂 I just love them!

    • thanks for the comment (i know you’re not a big fan of leaving comments haha) …

      you’re doctors sound amazing. i’m so glad you found them! i hope we all can find similar ones. my doctor where i am now is absolutely FANTASTIC having seen what he’s like i find that the doctors i saw before him seem even worse. they really didn’t bother with anything except med doses. i’m gonna be sad when i have to move back and and switch back to those doctors again…

    • Barbara

      I have had the opposite experience wit specialists, including a dermatologist who refused to answer questions, was rude and abrasive, and gave no explanation for massive dose of steroids. Finally, when I wanted to consult a rheumotologist of my own choosing, rather than a pal of his in a distant city, he refused point-blank to see me again, tho, I assured himI wished to continue seeing him. Since I live in a small town with no other dermatologists, I am left without any specialist doctor nearby.I feel abandoned.

  2. Fibro Fun

    Hello – this is a great post, and I agree with you on pretty much everything. My experience is that most doctors just don’t know enough about the illness (in my case fibro) and just throw things against the wall to see if they stick, or take the word of a drug rep, or drug studies which are now verifiably known to be ghost written by PR people who overstate the effects..

    Personally, I found a doctor I finally got it, and ended up taking Xyrem, which brought me to lower a lower point than I’d ever been and made my symptoms so much worse and I still haven’t recovered. Never thought I would see the day that I wished to be back to a state of fibro I’d been in formerly. I lost a dangerous amount of weight, I had no appetite, I could sleep for pain (which lead me to painkillers) and I truly feel I might have died. But I trusted my doctors who said I’d have almost no side effects. WRONG! It might work for some, but we aren’t one size fits all.

    Personally, and please don’t think me a crack pot, but I believe anyone with ME/CFS or Fibro (and maybe Lupus, but I know very little about that one) should talk to Naturopaths, as well as explore orthomolecular medicine.

    Watching a documentary called Food Matters, I learned that western doctor gets 4% of his education on nutrition. 4%! That’s crazy. The film talked a great deal about the benefits of megadose vitamin C therapy (tens of thousands of liquid vitamin shot right into the blood stream so it goes where it needs to to heal the body) for chronic illnesses, such as cancer and how it can add years to one’s life or save it.

    I woudn’t have believed it if we hadn’t convinced my mother in law (who’d suffered with various types of and stages of cancer over 10 years, and at the time was carrying an oxygen tank like a purse with a very short window of time left) and I swear within weeks, she felt so much better, she had energy, she could go out and do errands by herself, she lost a dramatic amount of weight, cut her pain meds almost completely, traveled started a business. Unfortunately, her liver damage was so far gone that it didn’t save her, but man, did it ever make the last months of her life enjoyable!

    There is a vitamin cocktail specific to Fibro called The Myers Brig Cocktail, which I plan to try soon.

    It sounds crazy, I know, I though it was, too. And sure there have been stories about “studies” that assess the effectiveness vitamins on cancer and other diseases, but those studies (easily verified) take a group of 60 something year old men with end stage prostate cancer, give a few ORAL vitamins everyday over a few months and when they die, say it makes no difference. Of course it doesn’t! It’s like comparing clementines to actual oranges.

    Worth a shot – plenty of Naturopaths who do it (and a ND has just as much knowledge has an MD, but with a smaller chip on their shoulders than most MDs, and much more open mind. It’s so much better than taking the zillions drugs a day I take to deal with fibro pain and then to deal with the side effects of that pain and NEVER has a person died of a Vitamin C overdose.

    Why don’t we here more about, as conspiratorial as it sounds, is that there’s no way to make huge money of something that exists.

    Look into folks – keep an open mind. http://www.foodmatters.tv/ – you can watch the whole movie online for five bucks.

    From now on, I’ll try everything natural before pharmaceutical as I’ve only felt worse since I started taking prescription meds.

    Please note, in no way to receive any form of compensation for spreading the word about this. I just wish someone had told me sooner, so if helps anyone else, I’m glad for it!

  3. @PrincessLilla another great post by @gradstdntwlupus http://wp.me/pX4mE-2M

  4. Ooooooo you are sooo right on with this one!! Illnesses that are so full of devastating symptoms and life losses really need a complete treatment program and a huge support system.

    The medical system is just not designed for us as patients, despite the fact that we have to appreciate how hard they work.

  5. I nominated you for the “One Lovely Blog Award”, if you don’t know what to do, you can read my blog post entitled “A lovely surprise.” x

  6. Pingback: Medical Blog Grand Rounds – June 29, 2010 Edition (Vol. 6, No. 40) | Medical Lessons

  7. This is a very powerful blog that delivers important insights into the patient-doctor relationship.
    One of the teaching hospitals in Ontario, Canada used to hire graduate students to present certain illnesses to the medical students. While, not an ideal situation, nonetheless, students did have to participate. They were graded by the “patients” as to things like “bedside manner,” ability to communicate to the patient, asking all the necessary questions, etc. I hope that those batchs of doctors developed empathy.
    My current pcp often has medical students and nurse practionners coming through her practice. What they learn from her is empathy, compassionate, and respect for the patient.
    Like Melissa said, I’m lucky, too, to have such a good pcp. I’ve had less luck with specialists, but I go when my pcp suggests I might find consulting with one helpful. In fact, I have one scheduled for next month.

  8. Pingback: 2010 in review « How Can I Explain it to You? The Life of a Grad Student with Lupus

  9. Pingback: The Ill and the Blameless « How Can I Explain it to You? The Life of a Grad Student with Lupus

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