• Shruti

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.

#communityeducation #autoimmunedisease #insensitivity #systemiclupuserythematosus #autoimmune #spoonie #chronicdisease #activism #fibromyalgia #SLE #GlassofWin #doctors #doctorpatientrelationship #doctor #fibro #lupus #doctorpatient #awareness #doctordiseaserelationship #ignorance #autoimmuneillness #compassion #chronicillness #patients #patient

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