Medicine in the Hot Seat
    The good news is, Mom got bounced by yet another physician due to my efforts. Good news? Yeah. I now figure if a physician cannot work with me and resents my efforts to make sure professional health care is appropriate to my mother and worth her insurance doling out money to pay for it, the physician's acknowledgment of this by dismissing my mother as a patient is good news.
    I received the letter today. I didn't expect it. I'd e'd a friend a few days ago, immediately after I Fed-Fedexed my letter, that considering my mother's history with the clinic and all its personnel, the overall productive relationship we've had with everyone except this particular doctor and since this doctor was new, it was our first visit and things could change, I was sure she wouldn't get bounced. Today, though, when I saw the envelope from the doctor that required my signature as recipient, I knew before opening it what it contained and I was relieved. I'd been thinking, over the last few days after having Fedexed my letter of review of the bad appointment on June 23rd, that it might not be a good idea for me to try to work with this doctor. This doctor is a close version of the last doctor who dismissed my mother because of me. One of the bones of contention during the appointment was, as before, scoping.
    Within less then two hours of having received my mother's dismissal we were back with her former PCP who'd left the clinic in November. At that time, in part because the other clinic was so vague about where her former PCP had gone and in part because I trusted the doctor who owned this clinic, I thought it would be best to stay there instead of trying to find her former PCP. I thought this would guarantee continuity of care because her records were there and the owner of the clinic would likely hire personnel who closely matched, in quality and outlook, himself and colleagues who'd gone before. After having our first Post-Former-PCP appointment with The Wondrous FNP I thought I was right. Now I think The Wondrous FNP may have been a fluke; a good fluke for us. The new physician is also a fluke; a bad fluke for us.
    I was up front with my mother's former, now current, PCP's assistant about what had happened; that is, why we'd stayed with his former clinic after he left and why my mother was bounced. I wasn't sure how he would react, since this physician saw us through the first physician dismissal, as well. I reflected, though, that he and I worked hard to develop a productive relationship on behalf of my mother that dignified her Ancienthood and her desires for her own health care. I decided it was worth the risk of the possibility that we may not be accepted. I even suggested to the person who answered the phone that the doctor may want to be asked whether he wanted to reaccept my mother as his patient and be told why I had finally sought out his office.

    I'm going to publish the letter I sent to Shiny New Doctor [heretofore to be referred to as SND]. Some of you may think it rough, tactless. Those of you who are regular readers, though, know from the publication of previous letters written to medical personnel that I can be tactful, complimentary, even effusively complimentary when it is deserved. This letter contains all these elements. I'm publishing it because I want others who may be experiencing similar circumstances with the non-alternative medical system on behalf of their charges to take courage from what I said. Depending on the physician, doing the same may get your care recipient dismissed, but that is not the worst that can happen; that contingency is a relatively easy deal.
    Either way, it is important, and becoming urgent, that patients who manage their own care and caregivers who manage the care of others come forward and speak out, directly, to those medical personnel who need to be corrected. The medical industrial complex is, as a whole, resistant, and, I think, running scared and apt to become even more resistant before patients and patient advocates arise en masse and say, "You exist for us before we exist for you." It appears to be trying very hard (although not necessarily successfully) to use American medical schools to flood the market with young physicians who are not only patient and advocate resistant but don't believe they can work with patients and medical advocates who don't lay down and play "Yes Doctor". I think the medical industrial complex is hoping that if it can graduate a tidal wave of physicians who have been indoctrinated to believe that it is best not to let the patient get in the way of all the latest gadgets and pills and tests and procedures and structures that non-alternative medicine is trying hard to install, medicine can revive The Era of The Physician As God and Healing as Sacred. It's too late, guys. The gig is up. Thus, I think, someone needs to record her trials and her tribulations with the current U.S. medical industrial complex in order to highlight exactly what medicine is trying to resist.
    The importance of making my record public is that, unlike spectacular cases involving rare diseases or horrifically expensive medical treatments that are refused to those who need them, the cases out of which movies are made, nothing about my mother's and my involvement with the medical system is unusual. This is all standard stuff: Ancient woman aging much like millions of other Ancients age; caregiver who is trying hard, in the face of everyday medical odds, to make sure medicine doesn't refuse to respect her mother's wishes and dignity and doesn't run roughshod over her mother's final years in the name of medical advancement in gerontology, just like millions of other caregivers. This is the kind of every day medical stuff people discuss offhand in their coffee klatches, over bridge or mah jong, at their book clubs. Medicine isn't going to change on behalf of the rare and the economically unfair. Medicine will only change when those clients in medical offices struggling to get information and have their opinions weighed in 15 minutes with physicians who are anxious to get on to the next fee or refer to yet another specialist in order to enhance their professional networks speak out about their experiences and their frustration; speak out to their physicians and their society, as well as their friends.
    My letter appears in the post immediately previous exactly as it was sent except for a few corrections of spelling errors and removal of names.
- posted by Gail Rae @ 23:32  0 comments   email...this post

 
Physician in the Hot Seat: An Open Letter to All Physicians
Shame on you, SND,
    for not being prepared for my mother's above mentioned appointment. It's time, now, for you to correct your mistakes so that you, my mother and I can begin to work together to continue delivering the medical and healing attention appropriate to her. Let me list your mistakes for you:

1. Your first mistake in preparation occurred before the appointment. When I called on 6/16/05 to get a seven pill renewal of my mother's lisinopril to get her through the day of the appointment, “the doctor”, whom I must assume was you, left a message with the pharmacy that I needed to call and make an appointment for her. Not only had this requested appointment been set for about a month, at the time I made the appointment I informed the office staff that her lisinopril would run out a few days previous and I would be calling for a small, interim refill. When I called the office on the 16th to alert them of the order I was going to place with the pharmacy I reminded the person to whom I spoke of the appointment and our conversation a month ago about this contingency. I don't know whether this was noted in the file but when the final call for the refill was passed to you I'm surprised you didn't check the file for information on the patient, thus discovering that she had an appointment set (originally) for June 21st (which we weren't able to make because I-17 was closed due to the Cave Creek Complex fire and rescheduled for June 23rd). This gave me pause, at the time, but, I figured, the glitch could have many minor explanations and my optimism for the upcoming appointment remained undaunted.
2. You didn't read the supplementary material I faxed to the office the week prior to my mother's appointment. Had you read it you not only would have been fully informed on why we were there and what issues I considered important to discuss, you would have been prompted to leaf through her file to discover the course of her treatment since her last appointment, why that course was set and probably would have leafed further to discover what her treatment history has been since she became a client of your clinic in August, 2000. You would have discovered, from information I've supplied in ascending detail and volume, often at her doctor's request, my own role in her care and treatment and probably would have guessed why I've become so meticulously involved in her medical care. You also would have been able to prefigure a way to suggest to and discuss with me tests and treatments you'd like to have performed.
3. You weren't familiar enough with her online record [at this clinic’s office] to discover that she had, indeed, had an ultrasound in March, 2004.
4. You became defensive at my shocked response to your lack of preparation. You should have acknowledged that you had neglected to prepare. I wouldn't have been pleased but I would have been a lot easier on you and we might have been able to get something done.
5. You tried to cover for your lack of preparation by making your desires for her treatment seem urgent and unquestionable. SND, at the time of her appointment and right now in her life, NOTHING is urgent and NOTHING is unquestionable.
6. I doubt you even realized that we live in Prescott and commute for medical care. If you had leafed through her file and read some of the material with which I've supplemented it you would have been very familiar with this aspect of my mother's medical care.
7. I was surprised that your attending nurse wasn't prepared, either, which I know, from working with her previously through your clinic, is unusual for her. When she came into the examining room toward the end of the appointment and handed me a cup for a urine sample I asked, “Even though you've got the results from her urinalysis last Friday?” Her stunned look told me that she wasn't aware of the lab results. When she recovered she said, “I want one of my own.” Considering my mother's recent history of UTIs, taking two urinalyses in less than a week is technically defensible. I know, though, from her reaction that this wasn't the reason she asked for it. The truth is, I felt sorry for her. She was trying hard to cover for you. When you escaped the examining room and she replaced you, my first shocked words to her were, “[Name of nurse], he wasn't prepared!” She didn't say anything, she was loyal and true, but her silence told me she knew exactly what I was talking about.
8. Typically during the winter your clinic is very busy. My mother has been a client of this clinic since late summer of 2000, so I know that during the summer the office typically is quiet. On the 23rd it was quieter than I expected. Thus, I know that your work load was not an excuse for not being prepared.

    SND, as I suggested in the office, you owe us a do-over. I suggest that the do-over be covered under your June 23rd billing to my mother's insurance carriers because nothing of consequence occurred at the appointment and you didn't earn your fee at that time. I know you could code the visit to look like a follow up but I stand firm on my suggestion because, SND, everyone in the U.S. who seeks medical care pays the price for unnecessary and/or unfulfilled insurance charges.
    As well, because the trip up and down is not easy on my mother and includes the expenses of a motel room (so she can rest and we can wait out rush hour traffic before returning), my feeling is that the do-over appointment can and should be accomplished over the phone at a time agreed upon between you and me. The actual phone call should be initiated from and the expense borne by your office, since it was your lack of preparation that caused the June 23rd appointment to be unproductive. This letter contains my requirements as far as agenda. Your input is expected and sought, as well. Before I get to the agenda, though, there are some items of which you need to be aware (which you could surmise from her file but I'll give you the benefit of my doubt and cover them here):

1. The reason we continue to seek medical care in Mesa through your clinic is threefold. First, she has a history with this clinic and all the medical personnel employed there. Second, I have sought medical care for her in Prescott, through doctors' offices on an appointment basis, the emergency room and [urgent care]. In every case, she has experienced a medical misadventure, one of them major and dangerous, and I've had to seek further care in the Valley, either through [the Valley ER] or your office. Finally, considering that medical care for my mother has turned into a tour de force for me in regards to making sure procedures suggested are appropriate and do not turn into medical misadventures (as far as I can help it), my feeling is that it is better if we have to go to some trouble for routine (and, as it turns out, urgent) medical care.
2. Of all the medical personnel who have seen, tested, diagnosed and treated my mother (there have been many as a result of ER visits and consults regarding her iron deficiency anemia) only a striking minority have actually diagnosed, explained and treated her chronic conditions appropriately. Two were doctors at [the Valley ER], one of whom was her attending physician when she received her blood transfusion in June of 2004. In the wake of her endurance of two years of inconclusive testing he actually looked up her history, reviewed it and told me that, in her case, it would be best to simply leave her plundered, ancient, fairly frail body in peace, take monthly blood draws to keep track of her anemia and, if necessary administer transfusions. Under this regimen she hasn't needed a transfusion since the first one, due, I am sure, to the fact that, without a doctor's help and with much research, I found an appropriate iron supplement for her, Niferex-150, which has so far kept her in stable, acceptable range for almost a year. As well, this doctor and a couple others have told me that, because of her age and the fact that she has spent almost all her life at altitudes far below Prescott, she will probably never reach “normal” range for Prescott. She has, however, in the last couple of months, achieved at least one instance of almost normal range hemoglobin and normal range hematocrit and RBC for Mesa.
       Treatment for her anemia includes a medical misadventure that taught me a lot about trusting my own instincts and research in regard to my mother. When her diagnosis of anemia became of acute concern to physicians in the fall of 2002 a colonoscopy was immediately suggested. At this time I was not yet a determined medical advocate for my mother. I was initially inclined to allow the procedure until I researched anemia in the elderly and the procedure and realized that not only was she probably not bleeding internally but the procedure required a level of patient cooperation of which my mother was no longer capable because of her dementia. In fact, her lack of ability to cooperate and to remember what was happening to her while she was on the table might even put her at higher risk for intestinal puncture than usual. For nine months, while her anemia scuttled through a disappearing/reappearing act, I fought the prescription against her PCP, a consulting hematologist and the gastro-enterologist who had been recommended to perform the procedure. Finally, I was browbeaten by the medical community into allowing it. Imagine my surprise when, immediately after the procedure, which had ballooned into twice its normal length, the first words to me out of [the gastro-enterologist’s] mouth were that she “never” wanted to “scope this woman again”, the procedure was “torture” for my mother, and I should see to it that all further testing on my mother was confined to imaging. No more invasive testing. In addition, although the gastro-enterologist told me my mother was loaded with polyps, all of which were removed, biopsied and found to be benign, there was no evidence of intestinal bleeding and from what she saw she considered it unlikely that my mother was bleeding in the upper digestive tract. She didn't qualify her recommendation for no more invasive testing with “unless her life is in immediate danger and there is a good chance that the procedure will yield either information or results that will not injure my mother's quality of life or will improve it.” I, SND, hold to that caveat but, so far, I have not needed to activate it. SND, the gastro-enterologist’s words to me were exactly what I had determined well ahead of the procedure being performed, and voiced to all doctors attending my mother, but nobody listened to me; in fact everyone did everything they could to undermine my confidence in my decision. Then, as it turned out after the fact, I was right.
       This particular incident made me realize that, despite having been told by another physician that I should “get off the internet, get out of the medical books and leave the job of medical care to [the doctors] since that's what we are trained and paid for”, I owe it to my mother, and to medicine, for that matter, to trust my instincts and my research and insist that, prior to procedures and treatments, physicians satisfy my requirements. Since then, I have become resistant to such common physician arguments as:
   • “But, she'll die!” Well, of course she'll die, and odds are, much, much sooner than you or me. One of my jobs as her medical advocate is to try my damnedest to make sure the medical community doesn't hasten that death. In the meantime, my mother remains alive and stubbornly following her own path through Ancienthood, which needs to be respected by the medical community;
   • “But we can use it for history!” One thing I've learned about my mother's medical history is that only two people in the medical community have bothered to access and interpret it: The aforementioned [Valley ER] doctor and [The Wondrous FNP]. I'm the one who keeps it in mind (and some of it on paper) so I can inform medical personnel, who have access to it but don't access it, about pertinent aspects of her history. Besides [The Wondrous FNP] and the [Valley ER] doctor, I'm the only one who actually considers my mother's history, both documented and undocumented, when deciding on medical classification and treatment. As far as I'm concerned, medical people may like the idea of collecting medical history but they don't use it; I don't know why, but I don't care, anymore. Nothing is going to be done to my mother simply for the sake of “history” anymore;
   • “But, we have to know why!” As it turns out, to adequately treat her anemia “we” did not need “to know why”. I suspect there are many other conditions to which this strategy refers and, I'm wondering now, if it applies to her recent history of frequent UTIs.
       As well, my guess is that a lot of what physicians say to me isn't recorded in their reports. It wouldn't surprise me, for instance, if the gastro-enterologist did not include her conclusions and advice to me in her report. One doctor who told me at one appointment not to consider a bone marrow biopsy, explained why, then concluded with, “If it were my mother, I wouldn't allow it,” (which I wrote in my notebook in his presence), did not remember, some months later, that he'd said this. When I reminded him of his advice after he reversed his opinion and recommended this procedure, he shook his head. I wasn't sure whether this was a denial that he'd said this or whether it was a gesture meant to remind himself that he shouldn't say something like this again to a patient/advocate who takes notes.
       SND, I am also responsible, as her medical advocate, for recognizing that metformin wasn't good for her and struggling to get her off it while maintaining what I was told were “necessary” fasting-normal range blood glucose levels, without the benefit, until very recently, of support of the medical community. I am responsible for determining that prednizone is contraindicated for her because when it does reduce edema it is too harsh and puts her in danger of a blood pressure crash, one of which she experienced 9/2002 which I mistook for a stroke and which the doctors attending her during her very short hospitalization for that episode subsequently labeled as a TIA (which I now realize stands for “What the hell was that?!?”). I am also responsible for discovering that this labeled TIA was, indeed, a sudden blood pressure crash. I have since discovered, on my mother's second and last course of prednizone, that it can also encourage swelling in my mother, rather than decrease it, thus, when I am asked for a list of medications that shouldn't be used on her I include prednizone. I am responsible for discovering that furosemide is only very occasionally useful or necessary for her and when it is, a dose of 10-20 mg is adequate. I am responsible for discovering that 5 mg/lisinopril twice a day is usually too much for her. I am responsible for making sure that she receives a goodly amount of antioxidants and natural blood thinners (instead of large doses of aspirin) in her diet to protect her as much as possible from compromising her liver (from her iron supplementation) and further mini-strokes, respectively. I am responsible for deciding that iron supplementation and regular review of her blood is better for her than no iron supplementation and fairly frequent blood transfusions.
       Not that I haven't made mistakes. I am, for instance, responsible for accidentally over hydrating her into an episode of severe low sodium that mimicked mini-stroking in early August, 2004. When she injured her back I was unaware that ibuprofen could cause stomach bleeding and initiated a short episode of that. But, I don't worry, anymore about mistakes I have made or might make because, all in all, I've made fewer and usually less serious mistakes than the medical community.
       Other than keeping as much of an eye on the industry of medicine as I can to try to keep its errors on behalf of my mother to a minimum and in the range of just this side of serious, I don't worry about medicine's mistakes with my mother, either, because I've learned, since 2000, that, the way medical practice is set up currently in this country, it's impossible for the industry not to make loads of mistakes with patients.
       I am not, SND, completely thorough in my medical advocacy for my mother. I learned slowly and reluctantly (I never imagined that it would be necessary for me to do this and I was caught by surprise when I discovered it was necessary) and, since I am my mother's full time caregiver, medical advocacy is only one of my many jobs on her behalf. Since I have no formal medical training, information is not always easy for me to find or interpret. I'm lucky that, within my family, two of my sisters have medical training, one as a lab technology supervisor/teacher and one as a kidney dialysis technician and, within my circle of friends, one is a kidney dialysis RN/supervisor. I have also witnessed first hand the medical mistakes made on some of my friends' elderly parents and this keeps me on the ball, as much as is possible, as well.
3. Regarding my mother's recent UTI history: It began after her hospitalization for her blood transfusion in June, 2004. I have discovered, since then, aspects of her history that probably go a long way toward explaining her recent UTI history. All UTIs that were documented were from e coli. Since then I've learned: a) from research that prolonged catheterization (over a few hours) sets up conditions in both the bladder and urethra that favor UTIs; b) [The Wondrous FNP] explained to me that ancient bladders and urethrae exhibit characteristics that allow auspicious circumstances for the introduction of bacteria into the bladder and I could expect my mother to experience more UTIs as she aged. As well, she explained that my mother's body no longer produces the optimum amount of flora and fauna needed to protect her, in-urethra, from opportunistic infectants; c) the quality of my mother's feces combined with the way she now uses her colonic muscles as a result of age causes all of her bowel movements to distribute anywhere from a little to a lot of feces throughout her entire outer uro-genitary tract. Her own physical inflexibility, now, causes her to be unable to clean herself properly after a bowel movement and, although I clean her and pay attention to these areas, even I am not able to catch everything in a timely manner.
       I knew the information about catheterization before her hospitalization for low sodium in August, 2004. As a result, I begged the hospital staff not to catheterize her unless they needed a urine sample, and then only briefly. They ignored me. She was, thus, catheterized for five days that time and about the same amount of time when she received her transfusion in June, 2004. My belief is that she was catheterized because of her copious incontinence; it's easier for hospital staff to deal with incontinence when the patient is catheterized. Interestingly, she was being treated for a UTI, e coli, at the time of her admission in August. The treatment extended through her hospital stay and into her short term skilled nursing facility stay immediately after. I can't recall whether or how many UTIs she experienced between the end of her SNF stay and her appointment with [The Wondrous FNP] in January but [The Wondrous FNP]'s concern and her interpretation of my mother's UTI history was such that she wrote a PRN prescription for Levaquin 250. We discussed courses and she recommended 500 mg 1/day for 7 days.
       SND, I too am concerned about the effect of frequent antibiotics on my mother's liver. I have been since this UTI debacle began. This, along with her iron supplementation, is why I suggested that some time soon a CMP, which includes liver enzymes, should be substituted for one of her monthly BMPs. Since the 23rd I researched uroscopy and discovered that the risks are: UTIs and urethral blockage. Now, considering all the above along with the gastro-enterologist’s cautionary advice never to have my mother scoped again, I am not willing, at this time, to allow her to be scoped for the cause of her UTIs, especially since I think the cause is pretty much covered in the above information. I have no problem with you prescribing a consult with a urologist. But, it'll have to be a urologist who is amenable to examining her without the benefit of invasive technology. Period. And, I'm guessing, once you've absorbed the information above, you will probably come to the same conclusion as me: The multiple causes of her frequent UTIs are obvious. Perhaps a urologist would have some cogent suggestions on how to relieve this treacherous little interlude in my mother's urinary health. BUT, I believe, first of all, that such a consult is not necessary immediately because I don't think her liver is showing signs of compromise, at this point, and that a CMP will confirm this. I see no reason why it is necessary to hustle my mother down to the Valley yet again during the hottest months, when she handles the trip better in cooler weather. I think that a PRN prescription for whatever antibiotic you deem appropriate is still advisable between now and late October/early November when I would be willing to set up an appointment for her with a urologist. After all, you doctors prescribe for UTIs without waiting for the results of a urinalysis. This is the way it's been done every time I've taken her to the doctor for one. But, if you continue to be resistant to this, perhaps we can come to a compromise in the event of UTIs between now and late October/early November: Suppose that you amend her monthly blood/urine draw prescription to include a urinalysis when I discover blood or the inordinate cloudiness in her urine that immediately precedes UTI bleeding. My understanding is that urinalyses are now done in less than a day. The results would be faxed to your office, to your attention, and you could determine, from those, what to prescribe for her, call our pharmacy here and order the medicine. In the meantime, maybe her monthly blood/urine draw should be amended to substitute a CMP for the BMP every month between now and the time I can get her in to see a urologist of your choosing in late October/early November, hopefully during a visit that coincides with another “routine”, face-to-face appointment with you. Thus, we can keep an eye on her liver, as well. I expect that, finally, there isn't going to be much other than what is now being done to handle this problem but, minus scoping and other invasive procedures that carry risks including further infections, possible blockages, etc., I am willing to allow scouting for answers.
4. I believe you need to know the history of my current medical approach to my mother:
   • The laid back treatment of her anemia originated with one of the attending doctors when she was transfused in June of 2004.
   • The loosening of acceptable boundaries for her diabetes management originated with a neurologist who recommended that 1) I not worry unless her blood glucose goes over 200 frequently (which it doesn't and probably won't) and that I not use injectable insulin unless this begins happening; 2) That an A1c of 7 “or a little over” is highly acceptable for her, as well.
   • The cutback on glucose testing was recommended by [The Wondrous FNP], who noted that I was keeping her diabetes under excellent management through diet and glipizide ER. She recommended once a day, if that. I tend to do it twice a day, three times if I get nervous or allow her a dessert or some other source of refined carbohydrates (fruit, bread, etc.) in higher than usual amounts.
   
       [The Wondrous FNP] is also responsible for finally telling me exactly how my mother's health profile would be defined by medicine: Chronic Renal Failure in the very early stages (which explains her typically high BUN, about which I've been unsuccessfully questioning doctors for ages) and Anemia Due to Chronic Disease. Mind you, SND, if she had just thrown these at me without explanation I would have been leery. Along with these pronouncements, though, she was able to describe exactly, without having previously seen my mother, her behavior and habits at this time of her life and, as well, exactly described her trajectory from 2000 to now. Considering her accuracy in describing my mother's health profile up to now, I believe she also gave me some very valuable insight into what to expect: 1) increasing lethargy, sleeping and sedentary behavior (she's always been a prodigious sleeper; she has, however, always lived robustly during her waking hours so, although I have been concerned about her sleeping, I've been more concerned about how hard it is to get her moving); 2) at some point her diabetes will “go on vacation” (I think this is exhibited in the increasing ease I experience in controlling her blood sugar but I think we have a long way to go before the vacation begins); 3) if she is not felled by unforeseen trauma she will experience an “easy, pleasant death”, into which her body will slowly and gently decline over the course of her CRF and ACD.
       She also cautioned me to try to rein in my tendency to badger her into movement and wakefulness (my efforts are largely unsuccessful, anyway; my mother's spirit, will, and ownership of herself are incredibly strong), as continuing with this will only add unnecessary frustration to both mine and my mother's life, which, I can tell you, is absolutely true. Keep her moving as much as I can, she said, but don't make both of us miserable by trying to get her to do that which she absolutely refuses to do. She added to keep a close eye on her so as to prevent falls (which I do).
       I am, of course, always wondering, wondering, wondering what I can expect, what I can introduce, when I should overrule my mother's desires and what I should accept. It would seem, from her regular lab results, that she should not be quite as sedentary as she is (and, believe me, I keep her less sedentary than she'd like). But, something I learned recently from an article on Medscape (I'm registered there as a doctor so that I can get the latest bulletins about gerontology): Diversity of health profiles within a demographic is significantly higher in the elderly than in any other demographic. So high, in fact, that both negative and positive expectations must be individually tailored.

    So, lets get on to the agenda for the phone do-over of the appointment of June 23rd:

1. I noticed that you rewrote her glipizide and lisinopril for “0 refills”. The glipizide will last probably through September (Qty 180). The lisinopril will last for only 50 days. Both are unacceptable. There is no question but what these medications are valuable to my mother's health. One of them occasionally needs adjustment and I am capable of doing this, but neither of them needs to be reevaluated and/or replaced. Considering my suggestion for how to manage her UTIs without an immediate urology consult, there is absolutely no reason, at this time, for us to schedule another appointment until late October/early November. These prescriptions need to be rewritten to run through that time. I'm not sure how you wrote the Protonix Rx. We're not done with the last and the pharmacy now has your instructions, awaiting our run out of the current prescription. At any rate, you should have those notes, so you can check them and rewrite that prescription for the same time frame, if necessary.
2. [Your attending nurse] mentioned something about writing a prescription for a different glucose meter. Frankly, I don't think this is necessary and I'm glad both of you became so flustered that you forgot to do this. I'm testing her mostly twice a day, sometimes less, occasionally thrice. The meter, despite it's age (we've had it since 2000) and supplies I have work well. I am sympathetic to the possibility of being able to test her without bruising her fingers and causing pain but, at the same time, we're doing fine with what we have. I'll leave this up to you, but, it's not a necessity.
3. I'm still curious about the aspirin issue mentioned in my fax of 6/16/05 (go back and read this, SND). I think she is probably getting enough anticoagulants through 81 mg aspirin and the supplements I give her that are natural anticoagulants (garlic and vitamin E) but I wonder if there is a way of determining this, in case her aspirin dosage needs to be adjusted.
4. Her curious blood pressure with its often low diastolic has always been a curiosity to me. On one occasion when I questioned one doctor he said, “It's fine. That's the BP of a finely tuned athlete.” My mother obviously, though, is not a finely tuned athlete. A nurse told me that a diastolic above 50 and a systolic above 90 were perfectly appropriate for my mother. Then, you mentioned, after looking at her blood pressure, that the diastolic indicated that she was dehydrated.
       The truth is she probably is always dehydrated from current medical standards. However, medical standards on hydration in the elderly have changed a couple of times just since I've been taking care of my mother. One doctor told me that my mother should be hydrated to the point of her skin showing almost as smooth as mine. That's how I got her into the low sodium mess. One of the doctors who treated her for low sodium said, “she should drink only when she's thirsty”. My mother lost her sense of thirst a couple of years ago and I have to remind her to drink. We sometimes have pitched battles over this. The skilled nursing facility managed to dehydrate her following doctor's orders and had to scurry to hydrate her enough to keep her bowels from impacting. I recognize, now, that hydration in the elderly is an issue about which the medical community is as confused as I am [See: Water Whichery]. But, this doesn't actually explain her curious blood pressure to me. Any straightforward, non-hedging information you can give me on this would be appreciated. Is it possibly connected with her Chronic Renal Failure?
5. I still want a thorough explanation of the indicators for her diagnosis of Chronic Renal Failure and where she stands in this process. See the fax sent 6/16/05.
6. Regarding the ultrasound disagreement: Yes, as you will note in my 6/16/05 fax, I believe it would be a good idea to perform another. I do not believe that there is any reason to do this before late October/early November. Please note, as well, SND, her last ultrasound was March 2004. I may be mistaken, but I believe that Medicare/TriCare allows for a routine ultrasound only every two years. So, if you agree with me that it should be performed before March 2006, it will need to be coded as necessary for diagnosis, rather than routine.
7. Again, as per my fax of 6/16/05, anything new on the incontinence control front short of surgery or procedures (such as the plug) that require my mother's conscious awareness?
8. Again, as per my fax of 6/16/05, any OTC supplements that should be added to or subtracted from her daily medication routine? Since we saw you I read a report about a recent study in England showing that Vitamin D/Calcium supplements do not appear to prevent fractures in elderly women. There were some problems cited in regard to the mechanics of the study, though. Any thoughts on this and whether I should continue this supplementation?
9. Discuss her UTI problem AFTER YOU HAVE READ AND DIGESTED WHAT I HAVE WRITTEN ABOUT IT ABOVE.
10. Discuss the iron and antibiotic danger to her liver and how to monitor and/or alleviate this AFTER YOU HAVE READ AND DIGESTED WHAT I'VE WRITTEN ABOUT IT ABOVE AND MY SUGGESTIONS.
11. Anything else you think it is necessary to bring up and discuss.

    Previous to the over-the-phone do-over, SND, I expect you to have gone through my mother's file and be fairly familiar with her history. I expect you to have read the previous faxes and caught yourself up on her January 2005 appointment and everything since. During the do-over I expect that you will refrain from defensive behavior if I question your judgment; I expect you to refrain from a sense of urgency that is unnecessary; I expect you to refrain from using all those lovely little “doctor phrases” that are meant to communicate no information and push the patient/patient advocate “into line”. I expect you to respect my ability to understand medical information and to honor my questions if I don't understand. I expect you to remember that if I am not satisfied with what I get from you I'll hit the books and the internet, again. Above all, I expect you to remember that I spend 24 hours a day, 7 days a week with my mother. I am a close, meticulous observer of my mother's condition and health. I am also, usually, the one who administers and manages medical prescriptions, thus, I am in the best position to be able to report on how she reacts to prescribed treatments. You need to listen to, trust and even solicit my observation, knowledge and thought about my mother and her health.
    Lastly, SND, on June 19, 2005, the New York Times published an article about a new healthcare company Steve Case has started: Revolution. The umbrella company extends over several others, one of which will provide what Steve Case calls “Medical Advocates” for people who seek help negotiating the medical-industrial complex. This is what I've been calling myself for a long time. I was delighted to read that someone was going to take what I've been doing for my mother seriously as an endeavor that is absolutely necessary to patients. You are young in your practice, SND. I predict that most of your career will take place in the Era of Medical Advocates. You have a wonderful opportunity, here, with my mother and me, to prepare yourself for this era. In me you're dealing with an avocational medical advocate whose training is pretty much seat of the pants. This gives you some time to breathe and adjust the way you practice before you're hit with the real thing. In appreciating the way I handle my mother's health care and joining me in helping me achieve my mother's and my objectives, you have an opportunity to learn, first hand, why patients are feeling the need for medical advocates. Look at all the information I've given you in this treatise, alone, about my accidental discovery of the need for my own medical advocation on behalf of my mother. As well, because I report voluminously on my web sites about my mother and taking care of her, you've got, at the flick of a keyboard, access to an amazing amount of healthcare reality that relates to the elderly (all of which is copyrighted).
    You know, SND, it may sound as though I don't have much respect for medical doctors. Quite the opposite is true. Although I do not consider physicians demigods, I want to be able to consider physicians my most valuable health resource in handling my mother's healthcare. I approach physicians from this perspective. I am, most of the time, frustrated in this pursuit, though, by physicians. I understand that the problem is indigenous to the state of U.S. medicine at this time. It's changing, though, slowly, sometimes almost imperceptibly, but it is changing. Wouldn't it be great if you and I could cooperate successfully, even in the midst of the trauma U. S. medicine is currently experiencing, to achieve my objectives in regards to my mother's healthcare? What, you should be asking, are those objectives? First, to make sure that she travels this final road of her life in the best health possible, considering both the inevitable and her wishes to be “poked and prodded by doctors” (her phrase) as little as possible. Second, to make wise choices regarding when to overrule her desire to be left alone by doctors and to see to it that I do not subject her to unnecessary “poking and prodding”. Third, to trust her internal, ineffable knowledge of her body and her health and to leave myself open to accepting her choices about how she wishes to experience these last miles of her life.
    SND, I'm not going to ask you to apologize for your lack of preparation and your poor attempts, at the time, to make up for it. Although you have earned the distinction of being the worst prepared physician I've ever experienced, believe me, you are not the first medical person who thought preparation wasn't necessary in dealing with their patients, thus, you are not the first who has been surprised by my intimate involvement in the design of my mother's medical profile and treatment.
    I am, similarly, not going to apologize for the way I reacted to your lack of preparation throughout the appointment. It wasn't my “best work”, I have to admit, but I was more shocked than usual at your lack of preparation precisely because I went to such trouble to make sure you were prepared, knowing this would be the first time you saw her, and me. I knew, before I started faxing information, that we would be seeing a “new doctor” at the clinic. I was told by the clinic to fax everything to [The Wondrous FNP]’s attention and the staff would see to it that it was brought to your attention. This is what I did. So, you can see why I was completely taken aback by your lack of preparation.
    Included in this package are three self addressed stamped envelopes. These envelopes are for sending me following, if the sending applies after you and I do-over, on the phone, my mother's June 23rd appointment (if you don't use them all, keep them in the file for later):

1. Rewritten medicine prescriptions that cover the time between now and what I expect to be my mother's next appointment with you, and, possibly, a urologist in late October/early November.
2. Amendations to the current lab prescriptions for blood and urine analyses (which should include orders that I am to receive copies of all lab results; if this isn't included I'll send the amendations back to you for rewriting).
3. Results of the urinalysis you ordered on June 23rd.

    The business at hand as outlined by this letter requires initial contact, either by phone or email, between us to determine the best time for a phone do-over appointment. I require this phone do-over appointment to be scheduled, not sprung upon me without notice. If you call for scheduling and we're not here or I'm unavailable to answer the phone (I am often elbow deep in taking care of my mother and can't get to the phone), we have voice mail which picks up after 5 or 6 rings. I will accept any reasonable time and would appreciate at least one day's notice for the do-over so I can manage that day in order to give my all to the do-over appointment without interruptions. I'm putting no time requirements on the appointment. Although I was appreciative of [The Wondrous FNP]'s generosity and consideration in regard to time, I'm also successful with short appointments IF BOTH THE DOCTOR AND I ARE ADEQUATELY PREPARED.
    I am Fedexing this letter to you. You should receive it no later than business hours, Tuesday, July 12, 2005. If I haven't heard from you or your office, either by phone or email, by the end of business Thursday, July 14, 2005, to schedule a do-over appointment, I'll call the office on Friday, July 15, 2005, to check on the progress of the setup. My call will probably be in the afternoon, as that is also a monthly blood draw day for my mother. I know that, often, doctors in your office are unavailable on Friday afternoons. If this applies to you I expect you to leave word with the office staff for me on when would be a good time for us to perform the do-over phone appointment. If it turns out that you decide to ignore all this, SND, my plan is to petition [the owner of the clinic] for redress of the disastrous appointment of June 23rd.
    Finally, SND, understand, despite the previous unfortunate appointment, I am sure, once you've considered what I've written above and looked over my mother's file, you will agree that the best solution to the problem is to do it over, over the phone. I look forward to hearing from you. I am optimistic that you and I can get off to a much better, much more felicitous start and can be an effective team successfully handling my mother's healthcare with compassion and appropriate medical attention and concern.

Thanking you sincerely in advance for your prompt attention to this serious matter,

[Daughter of and medical advocate for mother as patient] DPOA, MPOA, HCPOA


NOTE:  The doctor's response to the above letter was a short note, USPS expressed to my attention, citing the doctor's belief that he is unable to render the type of medical attention I ask for my mother. This is the same reason the Prescott doctor stated for dismissing my mother as a patient worded almost exactly the same. It's as though medical schools provide a course in The Need for Patient Dismissal and hand out templates for Letters Appropos to Patient Dismissal as part of the course materials.
- posted by Gail Rae @ 23:27  1 comments   email...this post