Michelle Sorenson, a type 1 diabetic and clinical psychologist, wrote an insightful article about the dynamics of our doctor interactions and how we can make them better. The article is published in the diabetes blog, ASweetLife. Here's her lede:
I have a confession to make. Sometimes I am not completely honest with my health care professionals (HCP’s). I am not proud of this. I try not to lie outright to anyone but I definitely withhold some truths. I feel it is important to talk about this, because I know I am not alone.
This article is a well-written description of the dance we all do when we talk to our doctor about our diabetes. We try not to tell out-right lies but we often withhold information that we think is not pertinent or do not want to derail the conversation when we have such little time. And we often leave the doctor's office feeling like we missed an opportunity.
Michelle writes about the secrets that she and others she counsels keep from their health care providers:
As a patient with Type 1 myself, I understand the emotional impact of dealing with the physical and psychological demands of diabetes all day. From counseling other people with diabetes, I also recognize the impact of the health care system on the health of those of us with diabetes. I know I am not the only patient who keeps secrets from HCP’s. I hear other patients’ secrets.
She goes on to say that there are two words that we most want to hear from our health care providers, “I’m listening.” So often I’ve let the doctor totally hijack my appointment time and then feel like there’s precious little time left to get to my issues. I often just give up and let it go. Michelle suggests that doctors could really change the patient interaction by opening up with, “What would you like to work on today?”
I found the whole article fascinating as it touched on secrets relating to eating disorders, which bring up the more general issues of shame and judgment.
What one thing do you wish your doctor would do to improve your communication and well-being? Do you keep secrets from your doctor?
I have a "I am listening" PCP, but I do not tell him everything-a lot of it is just none of his business. However, I have seen him for over 20 years, and when I need to talk or need real help and advice, he is there.
OK, now endo is completely different. I am lucky to make eye contact with him in the very short time I sort of get his attention. Oh, and I pay an exorbitant amount for those 3 minutes. I always feel robbed, so only go when I need pump/CGM scrips updated.
Docs need to see less patients (I know...) but they cannot maintain that pace and provide good care.
I'm sympathetic with the docs regarding the structural constraints put on their business models. As a diabetic, I have a lot of needs: Rx's, lab reports, BG management including hypos and hypers, thyroid issues, and a whole host of various stuff. Docs have their own agenda in trying to give you responsible care and making all the necessary notes. Somehow, when everything is said and done, it can be less than satisfying for the patient.
The only answer to all this that I have ever found, Terry, is self management. I have often commented that I use my endo for pump/cgm scrips and rely on my PCP for health care. The rest is self management. So sad, but so true.
I fear it is true and sad. While I can take care of myself now, I fear there may come a day when I can't call the shots, literally, and a slippery slope will ensue. My cognitive ability is the only thing that stands between me and my demise.
I've hidden things from my endo, specifically. Most of it has to do with carbs and how many of them I eat. He's happy that my A1c is good so I don't think he cares that much, but when I want meds or want them increased, I might leave some stuff out.
I only do this when small amounts of carbs annoy my BG, too. For example, I wouldn't complain about pizza when I splurge occasionally and don't have problems with lower-carb foods. But if I can't have a grilled cheese sandwich made with one slice of whole wheat bread, then I'll complain in general and still leave out the pizza. Meaning: I don't complain about major things when minor ones aren't problematic.
It's an interesting article. I think that communications with doctors are impaired by the hypo fear and weak targets that their industry foists on everyone. The goals are very appropriate for people who are not hitting them but, once you're "there", I believe that many of us are more than capable of trying to do better but, if you're told by a doctor that regularly running up to 180 after meals is "ok" or even "great" (better than 250-300 or whatever I suppose...), it will seriously impair your odds of getting an A1C in the 6s.
The main reason for this always seems to be hypos but, looking at a totally unscientific survey of luminaries of our community in blogs, self-reporting A1C results in the 6-7 range, "needing to do work" and, at the same time, "woah, where did that hypo come from" results. I had very similar experiences during my unfocused, more out of control years. Regular hypos, what I'd later learn could be called rage boluses (IV for really high highs...) all sorts of things. I survived and, once I started keeping track, I was able to turn my crazy experience and, for lack of a better word, more aggressive approach (perhaps fueled by Dr. Bernstein's book having been the first one I read when I decided to get a pump...) aiming for "normal" BG (ok, they're a tick above normal but still....). I've found it to be *less* work to aim lower because I'm more certain of my BG. I totally cheat with a CGM and fueling glucose burns with regular exercise however it work. I know that other people here and elsewhere have tried aiming lower and, instead of ending up in a hypo nosedive, find they're able to control it. It takes work and patience and lots of test strips but, with those tools and reasonable targets, I think that it's possible to hit it. Doctors need to help us see and reach for our possibilities while helping us with the tools we need. I have found it to be less work to have better BG than to be all over the place because, being pretty engaged with it, I sort of have a "force" think going on and can feel how things are going and what I find to be a good sense of how my diabetes is doing. I test and confirm all the time but I seem to know, much more than I did during the WTF years.
All of my doctors have been very supportive. I switched in 2009, when we moved and the new doc seemed a bit jittery about the situation at our first appointment and then some interesting issues in 2010 and 11 (hypos, long stories, both involved family events and me being an idiot and trying to do too much without eating enough...) but she's been very supportive. Unfortunately, she's moved (to Cape Cod, #jealous!) but I have appointment #1 with the replacement doc at the same practice tomorrow so we'll see what she makes of me and my A1C.
My doc gets the straight dope on carbs from my pump so I can't BS her on this issue. Although sometimes @ breakfast, if the DP seems to be feisty, I'll bolus for 30 and eat 25 or 27 so there may be that sort of untruth built into my reporting. Thank goodness it's not rocket science!!
I don't think he cares either way since my A1c is good, and he certainly didn't like it when I told him I was spiking from 20g routinely the last time I saw him. Obviously he wants me to be responsible, and responsible would be not "cheating" when I know it'll be a problem.
If I had to guess, I'd say that he'd want me to eat more carbs, but better carbs than the ones some days might find me eating.
I share my pump data and also have told my Endo that I use my CGM to constantly correct my BG anytime it is headed out of target range. I also give my pump false info to fool the bolus wizard into doing what I feel is a better solution than my pump has given me...this drives my Doc crazy...
As part of my job, we research with doctors on their interactions with T1 and T2 patients. In a totally secure, private online community, it is interesting to get little insights into their perspectives. They know that they don't get all the information and they can usually tell when they are being lied to. That behavior and sometimes the attitude/approach of the patient's partner factor into their therapeutic strategies.
For example, if the partner is not supportive some won't introduce a T2 to insulin even if it might be medically beneficial. Since 30% of new insulin users stop using it within the first 90 days, they figure its not worth the hassle since it will not work.
I don't know how many people realize that with some doctor's their perception of you (as a person) affects how your condition will be treated.
I don't hide anything from my doctor, because I would just be lying to myself. Having said this, I also have to admit I have a different interaction with my doctor than what others might have. I worry that when I change doctors, or as healthcare becomes more data-driven, this will change for me.
I don't download my meter data for my doctor's consumption - EVER! I discovered early on that if we have a bunch of data to look at, I lose the opportunity to discuss what I need help with. One appointment it might be how to use temporary basal rates to help reduce lows/highs, the next it might be a discussion on how to increase my weight, the next, a discussion on CGMs, etc, etc.
This approach currently works for me and my doctor. Part of the reason I can get away with it is I am fortunate to have few other issues and my A1Cs are typically good. I am certain that if I suddenly started showing up with high A1Cs, and the like, the downloading would begin.
But lying to my doctor, why would I waste my time, my money and the expertise sitting in the exam room?
With my pump, I found that blindly agreeing to the bolus "wizard" was leading me to the hypo/hyperglycemia rollercoaster. For me, part of this is because of the IOB calculation. Another part is because the "wiz" doesn't know what my basal insulin is, nor does it have a fine adjustment for my activity.
This is why having a doctor that is too focused on the empirical data is a waste. Life is for living, not contorting it into a clinician's view of the ideal way to manage diabetes.
My endo downloads my pump, too, so there's not much I can hide. This time around I was wondering if he would comment on the carbs, since I've been eating well under a hundred for a while now, but he didn't even look at the data!
Why do you have to give your pump false data? You can't override what the pump suggests? On both pumps I've used (Cozmo and Animas) the pump makes a suggestion, but allows you to override. Or it allows you to bolus manually and bypass the calculated suggestions entirely, if you want.
I bypass the pump calculations entirely. I find it much quicker just to figure out in my head the bolus I need at each meal rather than entering everything into the pump and then adjusting what the pump suggests. my dr looked at my i:cr ratios in my pump at my last visit and asked if they were correct and I said I have no idea, I haven't used them in a long time. I don't even know what they are set at. She was ok with that since my control is good. She said she would adjust them a little, just in case I ever decided to use them again(like I couldn't adjust them myself):-)
I started using a web-based upload service for my diabetes data. It's called Diasend. Since it accepts my pump, CGM, and fingerstick data, I get a pretty good summary of what's going on. When I input my pump boluses including the carbs I eat, then Diasend tracks and displays my daily carb consumption. I find this useful.
I can fully appreciate how you do your dose calculations. Before pumps became more sophisticated with pump math, I used to do all calcs in my head or on paper, including IOB calculations needed for correction doses. It's a good skill to keep current since if you ever need to go on MDI's, you'll be in practice.
I decided that the machine is more dependable with the arithmetic, especially when my brain is BG impaired or I'm tired, but I did the math longhand for so long, I can still do it when needed.
