Thursday, September 14, 2006
I Give up on Medicine.
That's the first of my "give ups". Yes, Mom's doctor's appointment went well, considering. Yes, although lively, the debate about exenatide was resolved in favor of not starting my mother on it. Considering how some of my questions were answered and one of my fears allayed, and, as well, considering that the "try it, it's possible it will work on your mother" suggestion (which I'll cover in a minute) does show promise of working, I am satisfied. Some things happened, though, during the appointment that caused me to realize that The Medical Industry is Medicine is Entrenched and it isn't going to change increment by increment. It is only going to change by way of the sea (meaning, a sea change), which hasn't yet swelled against The Shore of Medicine. Let me review what happened.
Mom's PCP told me he was not displeased with her blood sugar levels. Yes, he said, it looked like they were rising, but he felt that this could be addressed by adding a third 10 mg glipizide ER to either her morning or evening dose if necessary. I was concerned about this because glipizide, specifically the extended release form, has a tendency not to expand its capability when dosages are upped, but, as he pointed out and as I've read in certain obscure references, some of this depends upon the patient's chemistry. Thus, his first two arguments, let's not fool with success and let's try upping the dose when necessary, I considered legitimate and agreeable. His third argument, which I also considered legitimate and agreeable, was that when one fools around with medical regimens one risks side effects which are not known, especially with a medicine that hasn't been in use that long. I agreed with this and confessed that, although I'd not been able to find any evidence that Exenatide reacted with volatility to any of her other current meds, I wondered if this was because it simply hasn't been out there long enough for any evidence to have been collected. He nodded his agreement. His fourth argument was that he was more concerned about my mother going too low than too high. He'd prefer, he said, to see her between 70 - 134 in the morning, but she is doing so well and showing none of the consequences of high blood sugar so we have to assume that what we are doing is working for her body. I couldn't disagree with this but his argument made me realize something: He wasn't informed about exenatide and hadn't bothered to look anything up about it. One of the startling hallmarks of exenatide is that, because of its structure, which is unlike the structure of any other diabetic med on the market at this time, it protects against hypoglycemia. This effect was mentioned, sometimes shouted, in every single article I researched on the medication. As well, I mentioned it in the stuff I faxed him. Yet, he was unfamiliar with this. I realized, ahhh, he hasn't read up on the medication, even though I mentioned it to him first more than a week ago. He also didn't read the short (it was very short, less than half a page in 12 point type and bulleted, so it would be easy to read) supplemental blurb I sent him the day before the appointment along with the data I compiled. I actually tried to mention this to him again at the appointment but he waved me off.
Then, he honed in on the "morning after" salmon blood sugar and ignored the "morning after" blood sugars for the other three meals. When I brought them to his attention he shuffled through papers, quickly scanned them, at which point I realized he hadn't previously paid them attention, and said, "You have to remember, macaroni is very starchy."
Well, yes, I said, repeating what I'd written in the "Assumptions", this was the point. With cooler weather and the holidays coming up, I purposely surveyed starchy meals because they become fairly standard fare during these months, not to mention sweets. He repeated his advice to add an extra glipizide. At this point, in fact, he suggested splitting the pills. Luckily, I had the bottle in my purse and showed him that they are tiny and constructed so as to render this impossible. I didn't express my surprise that he was unfamiliar with the construction of this medication. That's when he said, okay, just add 10 mg, if necessary.
Then, he asked me if I had yet found a doctor in Prescott for Mom. This surprised me. It's an issue we've discussed before and about which he also has notes in Mom's file. He knows the problems I've had with doctors for Mom. He knows all about my preference for continuing with him. He even has all that in print in the file. I repeated all this, briefly, and he said he was concerned that if something "should happen" to Mom she wouldn't have access to care.
I assured him she had access to the Urgent Care Clinic, as well as the hospital. I also wondered, silently, why he was concerned about this because his policy is to send patients with urgent concerns to the nearest ER, whether or not he is on staff. In fact, even when we lived in the Valley, Mom always went to the nearest ER, on which he is not on staff, and this didn't matter. I'm not even sure that he is on staff at any hospital in the Valley.
Then, he dashed about the office, checked her ankles for swelling, of which there was none, which surprised him, listened to her lungs and heart, which sounded "very good", mentioned that he'd look at the "old things" to which I'd referred both in my appointment agendas and in the office, but he got busy and forgot, then he left the examining room and never returned. He also forgot to renew her glipizide prescription, which we'd discussed needed a refill, so I sent the nurse back for that.
All these little oddities roiled through my mind for about 24 hours. Finally, yesterday evening, I realized, he, too, doesn't want Mom as a patient, no doubt because of me.
And, you know what? I'm too damned tired of going through doctors like Grant went through Richmond. It's possible there is a doctor out there who would appreciate my medical advocation for my mother, how I care for her from a medical standpoint, how meticulously I observe and report on her, etc., but, you know, if you've read very far in this you know what I've gone through to try to find her a doctor here. I even sent out letters to offices explaining my care of my mother, her insurance, her conditions, her age, everything, and asked physicians who were interested to respond. None did. Two weeks later I called each office, referred to the letter, with which all were familiar, and followed up. None were willing.
So, I give up. Mom's PCP is stuck with us, unless and until he decides to tell me he's no longer interested in tending to her, which I now consider a possibility, although he did tell us he wanted to see her again in March, at the six month point, for a routine appointment.
See, the thing is, I haven't gone to medical school. I haven't taken and passed the boards. I can't write prescriptions. Medicine has the power and the passwords and, at this point in Medicine's life, I have the distinct feeling that It has decided It is in a position to strong-arm patients back into prostration. Isn't going to happen, of course, but Medicine has way too much clout for It to back down any time soon. And I'm tired. Really, really tired. I'm not interested in being considered a combatant, anymore, when, in fact, I know that if Medicine would pay attention to me and those like me, It would discover a valuable ally. For Christ's Sakes, I even do Its work for It!
So, last night, I had a long discussion with my mother about this problem. I explained it all to her, including my surprising and new disillusionment with her PCP and why that's happening. I told her that I know that, at this point in her life, there is every reason to believe and count on the possibility that, at some point, she is going to need intensive (although probably short term) Medical care. I explained that, yes, it would probably be better if we had a physician here but I was too tired to look for what is probably the one and only one physician, if there is even one here, who would accept my involvement in her care. I told her that there is every reason to believe that my medical vociferosity on her behalf might actually keep physicians from treating her. I explained that, because of this, I needed to be ever more vigilant about making sure we do everything at home that we can to make sure she remains as healthy and physician-free as possible. Finally, I asked her if she trusted me enough to allow me to give up on physicians and Medicine whenever I think I can and keep her care as home based as possible.
"You can't do worse than the doctors, Gail," she said. "In some cases you've done better. I trust you."
"Do you understand, Mom, that this might mean that there will be times when it appears that you need a physician but I will delay seeking one out?"
"Oh, yes," she said. "I'm fine with that. I don't want to see doctors unless it's absolutely necessary and, even then, I'd wait (which is true...she has a history of doing this, occasionally to her temporary detriment). I always have, and I've always gotten better. Do what you have to."
So, Medicine, I give up on You because You've given up on us. You don't need to give up on us, but You're afraid of us, so You have. I'll treat You exactly as You've treated us, with absolutely no deference to the Sacred Art of Healing, which You seem to have forgotten. I'll use You when we need You. I'll ignore You when we don't. If You don't want to cooperate with us, well, all I can tell You is that until You figure out that You're biting the hand that feeds You, You're going to continue to have problems, huge problems, much bigger problems than we'll have without You. My mother chooses the problems we'll have without You over the ones we've had with You. I choose the problems we'll have without You over the ones we've had with You. I believe our choices will enhance our lives. I believe Your choices have already and irrevocably endangered Your Life. If You want to have some choice in the Revolution of the Healing Arts, which is upon You whether or not You concede this, You need to embrace us, rather than trying to force us to embrace You, which, ultimately, isn't working. As You do so You will guarantee that You will become, once again, humane and honor the Healing Spirit Which You once embodied and Which awaits Your return.
Mom's PCP told me he was not displeased with her blood sugar levels. Yes, he said, it looked like they were rising, but he felt that this could be addressed by adding a third 10 mg glipizide ER to either her morning or evening dose if necessary. I was concerned about this because glipizide, specifically the extended release form, has a tendency not to expand its capability when dosages are upped, but, as he pointed out and as I've read in certain obscure references, some of this depends upon the patient's chemistry. Thus, his first two arguments, let's not fool with success and let's try upping the dose when necessary, I considered legitimate and agreeable. His third argument, which I also considered legitimate and agreeable, was that when one fools around with medical regimens one risks side effects which are not known, especially with a medicine that hasn't been in use that long. I agreed with this and confessed that, although I'd not been able to find any evidence that Exenatide reacted with volatility to any of her other current meds, I wondered if this was because it simply hasn't been out there long enough for any evidence to have been collected. He nodded his agreement. His fourth argument was that he was more concerned about my mother going too low than too high. He'd prefer, he said, to see her between 70 - 134 in the morning, but she is doing so well and showing none of the consequences of high blood sugar so we have to assume that what we are doing is working for her body. I couldn't disagree with this but his argument made me realize something: He wasn't informed about exenatide and hadn't bothered to look anything up about it. One of the startling hallmarks of exenatide is that, because of its structure, which is unlike the structure of any other diabetic med on the market at this time, it protects against hypoglycemia. This effect was mentioned, sometimes shouted, in every single article I researched on the medication. As well, I mentioned it in the stuff I faxed him. Yet, he was unfamiliar with this. I realized, ahhh, he hasn't read up on the medication, even though I mentioned it to him first more than a week ago. He also didn't read the short (it was very short, less than half a page in 12 point type and bulleted, so it would be easy to read) supplemental blurb I sent him the day before the appointment along with the data I compiled. I actually tried to mention this to him again at the appointment but he waved me off.
Then, he honed in on the "morning after" salmon blood sugar and ignored the "morning after" blood sugars for the other three meals. When I brought them to his attention he shuffled through papers, quickly scanned them, at which point I realized he hadn't previously paid them attention, and said, "You have to remember, macaroni is very starchy."
Well, yes, I said, repeating what I'd written in the "Assumptions", this was the point. With cooler weather and the holidays coming up, I purposely surveyed starchy meals because they become fairly standard fare during these months, not to mention sweets. He repeated his advice to add an extra glipizide. At this point, in fact, he suggested splitting the pills. Luckily, I had the bottle in my purse and showed him that they are tiny and constructed so as to render this impossible. I didn't express my surprise that he was unfamiliar with the construction of this medication. That's when he said, okay, just add 10 mg, if necessary.
Then, he asked me if I had yet found a doctor in Prescott for Mom. This surprised me. It's an issue we've discussed before and about which he also has notes in Mom's file. He knows the problems I've had with doctors for Mom. He knows all about my preference for continuing with him. He even has all that in print in the file. I repeated all this, briefly, and he said he was concerned that if something "should happen" to Mom she wouldn't have access to care.
I assured him she had access to the Urgent Care Clinic, as well as the hospital. I also wondered, silently, why he was concerned about this because his policy is to send patients with urgent concerns to the nearest ER, whether or not he is on staff. In fact, even when we lived in the Valley, Mom always went to the nearest ER, on which he is not on staff, and this didn't matter. I'm not even sure that he is on staff at any hospital in the Valley.
Then, he dashed about the office, checked her ankles for swelling, of which there was none, which surprised him, listened to her lungs and heart, which sounded "very good", mentioned that he'd look at the "old things" to which I'd referred both in my appointment agendas and in the office, but he got busy and forgot, then he left the examining room and never returned. He also forgot to renew her glipizide prescription, which we'd discussed needed a refill, so I sent the nurse back for that.
All these little oddities roiled through my mind for about 24 hours. Finally, yesterday evening, I realized, he, too, doesn't want Mom as a patient, no doubt because of me.
And, you know what? I'm too damned tired of going through doctors like Grant went through Richmond. It's possible there is a doctor out there who would appreciate my medical advocation for my mother, how I care for her from a medical standpoint, how meticulously I observe and report on her, etc., but, you know, if you've read very far in this you know what I've gone through to try to find her a doctor here. I even sent out letters to offices explaining my care of my mother, her insurance, her conditions, her age, everything, and asked physicians who were interested to respond. None did. Two weeks later I called each office, referred to the letter, with which all were familiar, and followed up. None were willing.
So, I give up. Mom's PCP is stuck with us, unless and until he decides to tell me he's no longer interested in tending to her, which I now consider a possibility, although he did tell us he wanted to see her again in March, at the six month point, for a routine appointment.
See, the thing is, I haven't gone to medical school. I haven't taken and passed the boards. I can't write prescriptions. Medicine has the power and the passwords and, at this point in Medicine's life, I have the distinct feeling that It has decided It is in a position to strong-arm patients back into prostration. Isn't going to happen, of course, but Medicine has way too much clout for It to back down any time soon. And I'm tired. Really, really tired. I'm not interested in being considered a combatant, anymore, when, in fact, I know that if Medicine would pay attention to me and those like me, It would discover a valuable ally. For Christ's Sakes, I even do Its work for It!
So, last night, I had a long discussion with my mother about this problem. I explained it all to her, including my surprising and new disillusionment with her PCP and why that's happening. I told her that I know that, at this point in her life, there is every reason to believe and count on the possibility that, at some point, she is going to need intensive (although probably short term) Medical care. I explained that, yes, it would probably be better if we had a physician here but I was too tired to look for what is probably the one and only one physician, if there is even one here, who would accept my involvement in her care. I told her that there is every reason to believe that my medical vociferosity on her behalf might actually keep physicians from treating her. I explained that, because of this, I needed to be ever more vigilant about making sure we do everything at home that we can to make sure she remains as healthy and physician-free as possible. Finally, I asked her if she trusted me enough to allow me to give up on physicians and Medicine whenever I think I can and keep her care as home based as possible.
"You can't do worse than the doctors, Gail," she said. "In some cases you've done better. I trust you."
"Do you understand, Mom, that this might mean that there will be times when it appears that you need a physician but I will delay seeking one out?"
"Oh, yes," she said. "I'm fine with that. I don't want to see doctors unless it's absolutely necessary and, even then, I'd wait (which is true...she has a history of doing this, occasionally to her temporary detriment). I always have, and I've always gotten better. Do what you have to."
So, Medicine, I give up on You because You've given up on us. You don't need to give up on us, but You're afraid of us, so You have. I'll treat You exactly as You've treated us, with absolutely no deference to the Sacred Art of Healing, which You seem to have forgotten. I'll use You when we need You. I'll ignore You when we don't. If You don't want to cooperate with us, well, all I can tell You is that until You figure out that You're biting the hand that feeds You, You're going to continue to have problems, huge problems, much bigger problems than we'll have without You. My mother chooses the problems we'll have without You over the ones we've had with You. I choose the problems we'll have without You over the ones we've had with You. I believe our choices will enhance our lives. I believe Your choices have already and irrevocably endangered Your Life. If You want to have some choice in the Revolution of the Healing Arts, which is upon You whether or not You concede this, You need to embrace us, rather than trying to force us to embrace You, which, ultimately, isn't working. As You do so You will guarantee that You will become, once again, humane and honor the Healing Spirit Which You once embodied and Which awaits Your return.
Comments:
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originally posted by Deb Peterson: Thu Sep 14, 06:45:00 PM 2006
Gail--I just have to sigh after reading this. It's astounding and frightening to consider where we are headed if the medical profession is going to discourage a patient's active involvement in her own (or her parent's) care. And they have certainly picked the wrong time to go all cabalistic on us--what with information out there in unprecedented quantities, and so much of it freely available. There is NO reason for people NOT to take advantage of it! I suppose the ER is analogous to a public defender, only I don't think there is anything legislated about the "right" to medical representation. Or is there? I guess I'm thinking--would a lawyer dump a client who took an active interest in her case? Probably not. Are there different incentives there? I know it's apples and oranges, but it's interesting to compare the two professions...
Gail--I just have to sigh after reading this. It's astounding and frightening to consider where we are headed if the medical profession is going to discourage a patient's active involvement in her own (or her parent's) care. And they have certainly picked the wrong time to go all cabalistic on us--what with information out there in unprecedented quantities, and so much of it freely available. There is NO reason for people NOT to take advantage of it! I suppose the ER is analogous to a public defender, only I don't think there is anything legislated about the "right" to medical representation. Or is there? I guess I'm thinking--would a lawyer dump a client who took an active interest in her case? Probably not. Are there different incentives there? I know it's apples and oranges, but it's interesting to compare the two professions...
originally posted by Mona Johnson: Fri Sep 15, 05:58:00 PM 2006
To follow up on Deb's analogy, public defenders here don't meet most of their clients until they appear before a judge - they often can't even pronounce their client's names. So they don't have the chance to really dump them. If we compared the two professions, we'd have to look at how well defendants are represented - let's not go there!
I think the kind of caregiving and attention to detail you provide is the only saving grace for dementia patients right now. In the meantime, I wonder if there are holistic doctors or others in your area besides primary care physicians who could take the time and interest in you and your mom. But take a few days to relax and congratulate yourself on your good work before you start looking.
To follow up on Deb's analogy, public defenders here don't meet most of their clients until they appear before a judge - they often can't even pronounce their client's names. So they don't have the chance to really dump them. If we compared the two professions, we'd have to look at how well defendants are represented - let's not go there!
I think the kind of caregiving and attention to detail you provide is the only saving grace for dementia patients right now. In the meantime, I wonder if there are holistic doctors or others in your area besides primary care physicians who could take the time and interest in you and your mom. But take a few days to relax and congratulate yourself on your good work before you start looking.
originally posted by Mike: Sat Sep 16, 02:50:00 AM 2006
Gail Rae
This is a sobering read (especially right after 'Startling conversation...') and a discouraging one too. I've just reached a point where I've cleared the last forward doctor's appointment out of our diary, and I hope it stays empty now. Our problem has been slightly different, in that we became enmeshed in strings of appointments with GP's, test centres, specialists, imaging surgeries, back to GP's, back to specialists, into hospitals, out again, etc, etc - and nothing whatsoever has been settled, or actually treated. Not only does the profession seem to balk at supplying legitimate care, it also seems to be preoccupied with its own logistics.
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Gail Rae
This is a sobering read (especially right after 'Startling conversation...') and a discouraging one too. I've just reached a point where I've cleared the last forward doctor's appointment out of our diary, and I hope it stays empty now. Our problem has been slightly different, in that we became enmeshed in strings of appointments with GP's, test centres, specialists, imaging surgeries, back to GP's, back to specialists, into hospitals, out again, etc, etc - and nothing whatsoever has been settled, or actually treated. Not only does the profession seem to balk at supplying legitimate care, it also seems to be preoccupied with its own logistics.
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