I have pancreatic cancer. After surgery for same, I immediately became insulin-dependent. This is all new to me. I have to eat low carb and low fat, moderate protein. I have a CGM, but not a pump at this point. I was knocked out on Morphine for a good deal of my most recent hospital visit. I’ll try to do better next time.
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Your plate is full and the lack of effective glucose management help from the hospital staff is disappointing. You can only do so much!
Please ask us questions. We’re all ready to put our decades of managing glucose to work for you. Great that you have a CGM. It is more important than a pump.
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A few diabetic consultants, health professionals, are themselves diabetic. We as a group would get improved service, if more diabetics were living a diabetic life too. In the meantime, we try to inform health people who know less about details than we experience in living with diabetes. I talk to fellow diabetics.
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Please keep in mind that attending physicians can be legally liable should you experience an insulin reaction while under their care. The same liability does not apply to the ramifications of hyperglycemia.
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This asymmetry of care regarding hypos and hypers is very much driven by the asymmetry of legal liabilities between hypos and hypers. I don’t think that this simplified view that this is the cause of the reality of hospital glucose care is at issue here.
Instead we should be pushing a more sophisticated care model that not only is driven by legal concerns but by moral ones as well. Does the diabetic who gets infected by a MRSA virus due to permissive hyperglycemia and exposure to this deadly infection take any comfort in this simple legal explanation?
Can’t we take actions that serve the diabetic population better?
I disagree that the asymmetry of care regarding hypos and hypers in a hospital setting is driven in large part by the asymmetry of legal liabilities. A patient is usually an inpatient for a few days to a few weeks and the job of the inpatient staff is to make sure the patient makes it home or to rehab. A week of hyperglycemia isn’t great but it isn’t going to be life changing for someone who is used to better control.
The real “crimes” are the poor quality of diabetes care in nursing homes and the low level of education and tools provided to most people - especially poor people - with diabetes. Only a minority of patients are achieving the 77% TIR (70-180) which usually translates into an A1c of about 7. That’s why CIQ is so popular with endos and many of their patients.
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Regardless of your wishes or mine, do you honestly expect any medical concerns ever will override legal-liabilty considerations?
Doug
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It appears to be part of that ‘one size fits all’ beccause there is so much information out there that they need to know about in all other areas that they honestly don’t have the time to become more familiar with the fine tuning many of us are able to accomplish. I think we can help by making sure the medical professionals with whom we work beome ‘educated’ through working with us and gain a better appreciation that diabetes is variable from individual to individual and it is far better not to treat them all equally. I’ve been fortunate with my hospital visits for various surgeries that the anaesthesiologist who seems to work the most with my doctors is aware of my pump and CGM and loves that I have them available. He has given a blanket order that ‘she knows what she is doing so just let her manage it’ and it’s great. I did have a site failure during my last trigger finger surgery so I advised him and since it was too close to surgery to replace it, got their ‘permission’ to syringe dose insulin to cover the developing high and keep me in range during the short surgery. When I came out of anaesthesia I was then able to replace the site. (I have to change every 2 to 2 1/2 days but this was after 1 1/2 days which sometimes happens as well).
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When I go to the hospital I ask my endo to please have the on-call PA come and visit me, and then meet with my docs and, if possible, the charge nurse. She explains to themthere is a note in my chart from my Endo that I manage my own diabetes. I usually get one nurse that trys to control me and manage my BG. I end up ignoring them, and if they try to scare me by threatening to take away my pump, I tell her to discuss it with my Endo after reading his chart note.
The pro med staff freak out about hypo’s for several reasons. First, in many states if a diabetic has an accident caused by a hypo they can be considered responsible. Second, some people are hypo unaware. Then, in times past many patients were non compliant. Fourth, they think we are brain dead. Last, you may have and accident while ltaking youre eys off the road to treat. and on, and on , and on.
Mike
The hospital I use (major university medical center) lets my BG run around 300. I yell them no but they insist it’s their protocol. And until latest admission, they fought me about using my insulin pump and CGM. For that last admission, my surgeon was the Chief of Staff for the whole place. I got him to sit down while I gave him a 90-minute lecture on diabetes, CGM, and pumps. Next day a new protocol was in place. Good to have friends in high places.
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It’s odd, usually a hospital will have the discussion with you before you go to the hospital. They have you sign a waiver a
That states you will manage your own diabetes and they handle everything else.
I was hospitalized twice, and it worked like that both times at different hospitals. Of course that was 25 years ago.
Really though if I was told I needed to let the staff manage my sugars, I would find another hospital.
This also worked similar for me in my last 2 hospital stays.
I just got out of the hospital.
I was in cardiac care for several days and continued managing my own insulin and blood sugars throughout my stay (pump and Dexcom CGM)
At no time was I required to sign a release - I simply told the unit nurses that I was more comfortable taking care of my management than I was turning it over to them. The only concession was keeping an hourly record of BG’s, basal rates, boluses and carbs consumed.
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I’ve known many professionals - doctors, therapists, lawyers, accountants - and I’ve yet to meet one who makes decision based on legal liability. Doctors have malpractice insurance to mitigate those financial risks. Professionals certainly give high importance to professional standards but that isn’t the same thing.
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@Jimi63 – Thanks for letting us know about your hospital experience. I’m sorry you’re dealing with heart issues on top of your diabetes. I just wish there was a third choice in the hospital when it comes to glucose management. A shared responsibility is what I have in mind.
I may be overly optimistic, but in the case where the patient needs some help but does not want to lose complete decision control, it would be nice to be on same side with the hospital professionals, yet be allowed to participate regarding insulin dose size and timing. What I’m thinking about is less adversarial and more collaborative.
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When I was diagnosed back in 1987, the nurse would bring me a vial of insulin and a syringe. She would say look you have 60 carbs your blood sugar is 145. Figure out how much you need.
Then I calculate it on my sliding scale, I would load the syringe and she checked it and I would inject it.
That seemed like the perfect balance to me. How did we get so far away from common sense. If a nurse or doctor asked to see my pump settings or wanted to know how much bolus I’m taking for a meal, I’m glad to tell them.
But as everyone knows if you are in a hospital, ther is no way to know when your food will arrive and if it will be the food you ordered and the carb count is accurate, so prebolusing is very difficult. If I take my insulin 20 min before my meal and it doesn’t come, I’m irritated. Or more commonly they bring the insulin after they bring food.
If I have my own insulin, I can wait for my food, they wait 20 min more and it works out.
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Thanks @Terry4
While the staff on the unit were fantastic, their primary function is cardiac care, with lesser attention given to other complications such as T1D.
A good example was evening meds, scheduled for 8pm (that would include insulin for Type 1 patients). One night they didn’t deliver meds until 10:30pm.
I don’t look forward to the day when we have to surrender our control to well meaning RN’s who don’t have time for us, or worse, extended care homes where all control will go out the window
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You are just in the waiting room for the cemetery when you get there, it seems.
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I’m not going to one of those homes.
For starters I figure the whole artificial pancreas thing will be perfected by then, and also I intend to take a one way trip to the Australian Outback and have a one way walk about and let the birds and dingoes have a meal after I’m gone.
I know it sounds gruesome and the timing needs to be perfected.
I would much rather return to the earth in a natural way than to wither away in a nursing home.
And in 10,000 years someone will find my fossilized skeleton and my insulin pump and put me on display in the natural history museum as “Diabetic man”.
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That is also how it was for me when I was diagnosed back in 1983. However, having been a peds RN for the last 30 years and have seen the decline and disappearance of diabetes education for bedside nurses. Your average RN doesn’t even really understand the basics of insulin timing and all things diabetes. Yes, they can follow an order to inject insulin for blood sugar blah blah blah but no concept of the impact of what/how their lack of knowledge effects the patient, especially T1, since the majority of patients they are seeing are mostly T2. And throw in the nursing shortage, the pandemic and here we are!
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