First, I want to say, and emphasize, that most people who become doctors do so because they want to help people. This is especially true, present-day, when compensation, especially for the generalist or family physician, is down. That said, there are always a few bad apples in the medical bushel.
In the medical world, there exists a practice that is rarely, if ever, openly discussed. Only with a “wink and a nod” is this practice acknowledged between members of the medical community. It is a destructive practice, one that has brought untold grief and trauma and devastation to the lives of its victim: the patient. It is a tragic example of victimization of the victim. It is the practice of patient labelling, as in “good patient, bad patient”. It is a blatant violation of the physician’s oath to “First, do no harm”.
The “good” patient is one who agrees with, and follows the recommendations of the doctor; the “bad” patient is one who has the audacity to disagree openly with the doctor. This patient is labelled, in the medical record, as being “non-compliant”. There are other terms that are used to communicate from one physician to another that this is a “bad” patient, such as “somatization”, or “somatically focused”.
Being told there’s nothing wrong with you, even if you are feeling badly, having the feeling that you aren’t being listened to, or having a disconcerting feeling that you’re being rushed through your appointments, are sometimes the only indication to you that you’ve been labelled. Listen to those feelings. They mean something. They mean you need to take action, and that won’t be easy.
The medical record is like the internet: it’s forever. So, once a label has been given to a patient, it not only never goes away, it is nearly impossible to rebut, refute and correct. Doctors who engage in this unethical practice don’t like to be wrong, and correcting an erroneous assessment and documentation requires an admission of error. That’s why it isn’t often corrected. But it’s your right to do so.
Countless patients, eventually diagnosed with fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, and many more difficult-to-diagnose and hard-to-treat diagnoses, have first been labelled “bad” patient. They’ve been referred for psychological evaluations and given psychiatric diagnoses. They’ve been from doctor to doctor to doctor, before finding one fine, curious, and determined physician who will listen and stick with the patient long enough to find a diagnosis and hopefully, a helpful treatment. At last, the labelling can be mitigated. But, sadly, it will never be completely erased.
First, let me share what’s basically (or should be) involved in a visit with your doctor:
* A review of medical history, past and current
* Patient’s perspective of their illness/problem with opportunity to update the doctor on changes since the last medical visit
* Clarification of the patient’s focus of concern
* Assessment of pertinent systems, such as blood pressure, temperature, oxygen level, pulse, lungs, pain level. Pain is now considered “the fifth vital sign” to be assessed at every visit; this is a law in some states.
* Review current medications and allergies
* Review labs/other diagnostic studies, give patient opportunity to ask questions, explain meaning of test results
* Update social/family concerns that may be affecting patient’s health (based on patient’s own assessment)
* Plan for treatment, discussed and agreed upon by patient and physician. The physician has an obligation to give you an opportunity to ask questions and provide clarification regarding your medical situation. The Joint Commission on the Accreditation of Hospital Organizations has made patient-centered care a primary focus at this time. That means, you should play the central role in addressing your medical situation. That means, Dr. Welby is no longer omniscient, and only you are qualified to say what you are feeling.
So what can you do if you suspect you’ve been labeled, or that your medical record is inaccurate? First, you can request a copy of your medical record. By law, this must be made available to you, upon request, with some limited exceptions. You may be charged a small fee for this, but most organizations will provide a limited number of pages, free-of-charge. You can also request a copy of a specific visit, as in the case of being seen by a doctor for a second opinion, a one-time only visit, or lab and other test results.
Unless you read your medical record, you cannot know what’s in it. If you find inaccurate information, put a request for corrections in writing and give it to your doctor. Ask your doctor to make the needed corrections, or at the very least, to put your original written request for corrections into your medical record. You can also submit a written rebuttal, if you feel a physician has mislabeled you, and request the rebuttal be added to your medical record. Don’t expect the doctor to admit to an error or to add an addendum to your record to amend his/her original assessment.
Secondly, you can take someone with you when you visit a doctor with whom you are unfamiliar, or haven’t yet established a solid relationship. It’s not a bad idea to have a witness, and it can make the doctor think twice about sticking you with an unwarranted label. We’ve all been taught that our doctor is someone we can trust; this is usually the case, but unfortunately, not always the case. Currently, a study is being done asking the question: “How much do we really know about what goes on and is said during a patient/doctor visit?” For the most part, we know only what the doctor documents.
One recommendation that I have is to require that, before entering a visit note into a patient’s medical chart, the patient must be given the opportunity to read, then initial or sign the note, acknowledging that what is contained in the documentation was/wasn’t discussed during the visit and that an opportunity was/wasn’t given for the patient to ask questions. If the patient has concerns about the accuracy of the documentation, s/he would be given the opportunity to execute a separate addendum to the visit note, detailing specific concerns. Only after the patient has had the opportunity to “authenticate” the visit note, as described above, can it become an official part of the medical record. The patient would always have the right to waive this “authentication” process simply by initializing/signing a statement, so indicating.
If you’ve had the unfortunate experience of being mislabeled, don’t do nothing. But stay rational, as angry or devastated or frustrated as you might feel. Keep it professional. Don’t lose your temper and “give your doctor a piece of your mind”: that will only make things worse. Put requests in writing, and keep copies of all requests and reports. If you have a good, established relationship with another physician, especially if it’s a primary care physician, ask if s/he would be willing to write a rebuttal opinion or response to the doctor whom you feel has mislabeled you. A legal confrontation can be expensive and emotionally exhausting, but if all else fails, and you feel strongly about the situation, if you feel the mislabelling is closing in on being libelous, that is also your option.
Patient labelling has to stop. Until it does, hang on tight, and don’t give up. And most of all, remember: there’s no such thing as a “bad” patient. Only a few unethical, perhaps cavalier, doctors.
©Janet Mitchell, November 2011