Despite that my son’s surgery and his doctors’ dedication to providing him the best care giving me some hope that there are doctors out there who are kind, ethical, and want to go the extra mile for you, there was still one pesky problem that wouldn’t resolve itself spontaneously; that of the tainted medical records from Emory.
Although I’d tried to put it out of my mind, the very real danger that the libel contained in these records may continue to do damage to my reputation outside the offending system and thus prevent my receiving care soon enough to prevent dire consequences was and is a very real danger.
As I sat across from Dr. P. the new GP, a woman of East Indian descent (most likely second generation) who was young enough to be my daughter I fought through the horrible flu-like aching in my muscles, weakness, and feverishness to engage her on the topic of my referral to Vanderbilt after having left numerous messages with the office to obtain the current status of the process and to try to find out if, and when she’d fill out the necessary paperwork. I’d recently been advised from one of the receptionists on the phone to obtain 3 release of information forms; one addressed to Emory for her to receive, one for Vanderbilt, and another for something related to Piedmont’s records.
The disjointed and partial communication via several different office staff when I’d called in over the past few weeks was hard to decipher and some was contradictory, merely stating that as far as they understood I didn’t need a referral and that I could refer myself. Now after given my latest instructions for these 3 seperate release forms I wasn’t entirely sure which records they needed released and what the doctor would think, and then do after she read what was inside. I had decided I didn’t want to do anything hasty and wanted to bring a copy of my own and discuss with her what she thought would be relevant and what not necessary before releasing such bombshells into Piedmont’s system, nor to the out of town specialists. While the poisoned pills contained are complete lies and have no basis in truth the infectious and alarming nature of such coded language passed on from doctor to doctor can and does put my future health and even my life at risk each time a new doctor might read such derrogatory comments written under the guise of “medical opinion”.
As I sat in my wheelchair facing this new doctor I wondered why now it was suddenly so imperative to her that she have these records which contained so little of clinical use and yet had so much potential to destroy my future. What was once a mere suggestion was now presented to me as an ultimatum, and I don’t take well to ultimatums. If this was her idea of forming a good solid doctor/patient relationship and inspiring trust she had a very strange way of showing it.
A feeling of extreme aversion came over me and with it an anger at myself for being so weak as to be at all pressured by it. I really wanted to just say “No way! Forget it! You can do the tests that have been done all over again but you’re not using these records!” but then what if this time she really was going to follow through? It was a total crap-shoot as to whether this would get me to where I needed to go or whether this throw of the dice was going to lose me the farm. It was a no-win situation, and in my estimation, a bad risk either way.
Now, even more ill than I was a few weeks ago I weighed my options and neither looked good. None of the other GPs I’d interviewed who seemed at all compatible were anywhere near writing the referral and one had wanted me to find yet another local neurologist and for him/her to be the one, tacking on God-knows-how-much more delay time onto my diagnostic process (and thus to my treatment).
Dr. P. waved the form from side to side in front of her. “You know” she prefaced, preparing for a fight with a rather aggressive offensive maneuver, “I don’t have to fill out this form.” Then testing the water further, “I could have said…Ya know what? No, I’m not filling this out…”
“Oh yeah?” I thought internally? “Well guess what, miss smarty-pants…then what’s my incentive to stay here one moment longer?”, the words flooding my mind so close to the tongue I could taste them. But the lack of any real incentive for me was exactly her game plan and it was more stick than carrot. Behavioral conditioning 101; that may gain compliance from the patient in the short-term but at much greater cost than benefit to the relationship as a whole. In some respects her approach was Machiavellian, yet Napoleonic in its delivery. “
…but I’m doing it because I care”, she finished. “That should show you something. You need to trust me” she pressed on. Somehow, actually it had just the opposite effect on me. The way I received her statement was more like the feeling one has when a person who has offended you apologizes and then immediately nullifies it with a narcissistic self-justification and the suggestion that it was you who made them do whatever wrong they’d done to you in the first place. At that moment I wasn’t sure which repulsed me more; her backhanded self-proclamation of benevolence, or my withering attempt to stand my ground.
Intellectually I knew that while not required by law, this was no extravegant favor she was extending outside her job description, but instead what any good GP should do for a patient (if it matters to her to deliver good care to her patients). Referrals and the paperwork that come with them are part and parcel of the routine work of a primary care physician being that they are charged with coordinating care across the various specialties that their patients need linkage to. However, her sense of her own power in this particular instance seemed to embolden her and at the same time shake my own self-confidence. I was back in that floundering zone again, the same one I’d been in the first time I’d met with Dr. V., and on that awful day in December when I was reduced to pleading for help at Emory’s ER, overcome by the uneasy feeling that I wasn’t “in Kansas anymore” but instead in an unfamiliar and quite scary place the parameters, and unwritten rules of which were near impossible to read nor comprehend. This is a place I don’t like, a brain-bending cause and effect that seems to make me lose all sense of time and space and send me down some weird rabbit hole. I grappled to regain my proprioception and perspective, losing my train of thought in my fluster to communicate.
Had it been true compromise I could have lived with that but it wasn’t that at all. Had it come from a place of partnership, strength and dignity then it would had been compromise in the true sense, but this…this was not free choice but something else entirely. I felt disgusting and at the same time manipulated. As bad as it was that signing a release of the Emory records could ultimately mean curtains for me if it closed doors crucial to my survival, even worse than that was how it made me feel about myself. I knew it was far from an even trade but this inner caving and shutting down process just seemed automatic, almost robotic.
I know what Bernie Sanders would have done. He would have stood firm on his position no matter his opposition. Suddenly I felt like a complete wuss and then hated myself for it just as quickly. What does one do in such a tough position? I really don’t know. Maybe there’s no easy answer. It was another one of those “Which do you want to keep? Your arm or your leg?” dilemmas, or rather “your life? or your reputation?” Without your life you cannot have a reputation, but without a reputation life isn’t worth living. Furthermore it could end up worse than a trade-off. I might lose both in the end. It seemed I knew what I really wanted to do but felt unable to do it, and no amount of logically thinking it through would help.
I’m trying to put a period at the end of these awful, incorrect, unethical, and libelous medical records but now I’m expected to drag them along from doctor to doctor. How could that possibly help anything?
I leaned forward in my chair, put my head in my hands and let out a pained grimace and groan, made one more attempt to make clear to her that such action might really cook my goose in the hands of the wrong doctor(s), and then the rest of my resolve deflated like a spent balloon. She claimed that her license was on the line if she were to for instance include Dr. Vs last doctors’ notes, and not her first (probably more hyperbole than truth), stating that if she included any of Dr. Vs neurological record she had to include it all. I found her reasoning very strange and illogical. No doctor I’ve ever met thought like that, not even Dr. H. at his worst. It more closely resembled Dr. Bs new locked down approach than any of the other doctors, but I’m not sure even he would have included material in a referral or entered it into Emory’s record if he thought in his heart of hearts that it might do more harm than good.
Therein lies the crux of the matter; to do no harm. The hippocratic oath was relevent when it was written and still is today. Although its wording has changed over the years the spirit of the message is very clear and unmistakable.
A doctor must not do anything he or she understands will hurt their patient. PERIOD!
Like I’d told Dr. Ps nurse, releasing libelous material written by those who are essentially your enemies is tantamount to volunteering a past supervisor as a reference at a job interview who has nothing good to say about you. “Would you do that?” I’d asked her, to which she had to in all honesty say “no”.
“Well, there you go!” I replied. “It’s the same principle!” The nurse looked back at me wide-eyed and dumbfounded knowing I had a very good point.
“Don’t you realize that every time I have to show these records to a new doctor I’m re-traumatized? Do you realize the gravity of the risk involved, and how upsetting that is? This is not an irrational fear, but very real” I told Dr. P.
“Yes, I know” the doctor responded, “There is the doctor/patient relationship but it comes down to choosing between what’s best for you and what’s best for me and I can’t do something that could place my license in jeapardy”she said. Although I’m sure her assertion that her license was at stake was a gross exaggeration, therein lay the ugly truth with all lame excuses stripped away; defensive medicine!
Realistically I knew that at least here in the state of Georgia nobody and I mean nobody is out to take doctors’ medical licenses (even in those instances in which they really should be revoked) so I know that state regulators are too busy to care about what parts of a patients’ medical record doctors are pulling to send to specialists and whether or not a doctor charts a patients’ symptoms. I wasn’t suggesting she break any laws but if in fact there is any truth at all to what she’s saying regarding this prohibition it is probably such small stuff that nobody would bat an eyelash, much less raise a major issue over it.
“My role is to look through and determine what’s relevant and what isn’t, and your role is to tell me your symptoms” said Dr. P. This, just after she’d told me that she thought it would be illegal for her to chart my symptoms since she could not verify them with hard proof, so then wouldn’t it be a waste of time for me to tell her symptoms if they hold no value in the chart? I went on to say that in many respects Dysautonomia is a clinical diagnosis anyhow, “and besides”, I replied, “how do you really prove near syncope and many of the other symptoms?” (short of completely passing out cold in her office at the appropriate appointment time). It was another impossible expectation, a bar that could never be met in the real world.
The look on her face told me that I was making valid points she could not dispute.
“It can take 8 years for a patient to obtain an official Dysautonomia diagnosis, precisely because these kinds of constraints make it next to impossible to diagnose anyone and everything’s so strict nobody wants to be the one to call it, and here in Georgia they don’t have the facilities for the few specialized tests that do exist, so what are you going to do? They could do a tilt table test but that won’t do much good unless it’s classic POTS (which I don’t think mine is). All you can do really is go on what the patient tells you.”
Dr. P. nodded in agreement. “I know.”
“I’m just so exhausted, I’ve been suffering alone with this already for at least 7 months, and then to add insult to injury it’s embarrassing to feel as though I owe each new doctor an explanation because of those people who took it upon themselves to sabotage my chart!”
“You don’t owe me an explanation. I believe you” she slipped in almost as an aside in the midst of our fast-moving conversation, her intonation lacking quite enough passion to be fully credible. I think I would have breathed a sigh of relief had I been convinced she meant it, but her painstaking caution throughout the office visit, and hesitancy to fill out the form until now was what gave me pause. The ER doctor in December told me that too, and then I found out she was only telling me those things to get some sort of compliance out of me; sort of a version of “You can catch more flies with honey than with vinegar”.
I kept looking for signs of the real reassurance I needed from Dr. P. yet it seemed that just when the conversation veered toward a meeting of the minds it whipped away like a boomerang and I was once again grappling to obtain some semblance of unity that conveyed that we were truly in this together in amongst all this chaos on top of my muscles aching unbearably, the severe fatigue, the weakness, the low-grade temp doing a slow and steady burn that was documented that day by the nurse, the histamine reaction that was assaulting my sinuses, its accompanying systemic inflamatory response, and the awareness all the while that I was being expected to throw myself onto a live grenade; to essentially kill myself in order to save myself. Odd dichotomy there!
She was pushing the trust thing pretty hard, approaching it more like a command than an invitation and it was precisely that method which made trust not possible. I told her that I couldn’t just snap my fingers and suddenly trust her, especially when she is insisting I do something I feel strongly is detrimental to me and could seal my fate and that after what has happened to me it will be a long time before I can trust any doctor. Trust cannot be a command nor an obligation I owe her as payment for something she does on my behalf in the course of performing her job. I’m a long way from convinced that she truly hears me and respects what I need, and pulling rank on me is not the way to get me to trust her. She has to earn my trust. “It’s a process” she said of the road from here to Vanderbilt. “You just need to have patience.”
“For how long?” I thought. It’s late and I’m not getting any better overall. Yes my symptoms wax and wan and different systems of the body switch on and off like a flickering lightbulb and alternate, but the truth is that my baseline is worse, and this “process” cannot be open-ended if I’m to have a good or even fair prognosis. I know that and I’m sure any medical professional worth their salt understands the concept of early detection and treatment and its impact on outcome.
When I see things working out in my testing and treatment, that she’s truly behind me 100%, and when I feel that our words are not merely whizzing past one another’s ears then and only then will I trust her or any other doctor, for that matter. The office visit ended like it did the previous time with my telling her what I needed to be reassured, and her telling me in one form or another she couldn’t give me that, and then her saying “I feel like we’re going round and round.” Well yes, it would feel that way because for the most part I think our priorities and beliefs about our roles are very fundamentally different. The distinction between where she sits and where I sit is that she can walk away from what’s happening in my body…I can’t. I’m the one with the most to lose if things aren’t handled correctly from here on out. I’ve got it all on the line. She doesn’t.
Maybe this is the closest I can get right now to a match from those local doctors available to choose from after my extensive search of the metro-Atlanta area, but I really question whether this is going to work out in the long-term. I hope I won’t come to regret doing what she asked before I left the office that day. I’m still not really OK with it.
I’m now in the process of filling out my section of the Vanderbilt form and in addition will fax her my BP stats from my November 2015 Piedmont hospitalization. Only time will tell what happens next.
Then the question still remains as to whether the whole thing actually gets submitted once I fax it back to her office and whether I’ll be accepted, and that’s still just the beginning towards coming home with a firm diagnosis.
I am so sorry you’re going through all of this. xo
Thank you for your support. 🙂
So sorry you’re dealing with things like this. I have some less than flattering records from doctors who didn’t even care (or listen), and it’s a pain getting actual treatment for my real issues now. 😦
I’m sorry this has happened to you too and that it has hurt your treatment. All this has given me some ideas about how we patients can unite around this issue. I would really like to put a panel together and have a bunch of us share at some big conferences how this sabotages patient care. Maybe we can be a part of changing the field and throwing out these detrimental practices so that patients won’t keep having this happen in the future.
I’m so very sorry for all you’re through. Will be thinking of you!
Thanks so much 🙂 I really think they need to have a “Not Otherwise Specified” category for instance, like “Movement Disorder NOS” or Dysautonomia NOS” for diseases and disorders that don’t fit neatly into a nice neat classic box, instead of doctors assuming it’s in a patient’s head.