It finally happened to me

It finally happened to me. I wound up in the hospital this week after showing up at the ER with abdominal pain and vomiting. It turns out I had a kidney stone. I ended up having a stent put in and spending two nights in the hospital.

I have been hospitalized about five or six times in my life since being diagnosed with Type 1. I have had it 32 years so it’s not something that’s new to me. Anyway, every time I have been hospitalized, I have always maintained control of my own diabetes care. Not this time though.

As soon as I was admitted I told them that I had plenty of my own supplies with me and that I would manage my own blood sugar. No, they would do that for me. I was not to take any of my own medications or do any BS checks myself.

At first, it didn’t matter so much I wasn’t able to eat anything due to being doubled over with pain and throwing up.

After I had the stent put in and was feeling better and wanted to eat, that’s when the battle began. There seemed to be no diabetic dietician monitoring my food. Random food was brought to me the first night after the surgery. Mashed potatoes? Custard? I also got chicken soup which was ok. When I asked for insulin so I could eat it, I had to wait nearly an hour for it to come and when it came it was only two units of short acting. I told them two units wasn’t going to do anything. Nope, all I got was the two units. I was starving so I ate. Two hours later my blood sugar was over three hundred. So I had to then call for a correcting dose and wait for that to come and haggle with them about how much I was going to get.

During the over night at about 2 am I checked it myself. 220. I took my own correcting shot because I wasn’t going to call for the nurse and play an hour long game in the middle of the night just to get four units of insulin. I woke up the next morning fasting at about 150. Not great, but I was satisfied considering what I had to do to get to that number.

Breakfast, the same thing. They bring me two units of short acting. I told them two units wasn’t going to do anything. That I needed at least 6. They come back with a compromise, how about 4 units. No, I want six. I asked to speak with the person who was making these decisions. She came in. She was about 25 years old. Of course her reasoning is that she didn’t want me to bottom out. I told her that I have been doing this 24/7 for 32 years (probably longer than she had been alive) and that I knew what I was doing. Then I told her that I had my own insulin and diabetes supplies in my bag right on the chair, that I had been doing it their way like they wanted, but that I would take my own insulin if I felt like it was in my best interest to do so. She agreed to the six units at that point.

I was discharged soon after eating anyway. As soon as I got to the main lobby of the hospital, I checked my blood sugar and did my own corrrcting shot. I was never more glad to leave a place. They fixed my kidney stone situation but they sure as hell had no clue what they were doing in the diabetes management department.

I will never again agree to let someone else manage my diabetes. If they don’t like it, they can refuse to admit me and I’ll go someplace else. Or just die on the sidewalk.

12 Likes

I feel for you. About 15 years ago I had outpatient hernia surgery. The anesthesiologist ran me up to 200 during the surgery for safety’s sake. He did not consult with me beforehand. And, of course they tell you you should keep BGs under control for good healing. They just plain don’t know what they are doing.

1 Like

How frustrating. I’ve fortunately always had control of my own diabetes during hospital stays. I think if they wanted to take control, I would do so only with a written contract that they would treat diabetes to my target range and not let me run high. It seems to me that something needs to change systemically in the way hospitals manage diabetes. Though the sad part is that a lot of people with diabetes probably don’t care much because the control they get in hospital is similar to the control they have the rest of thee time (if they are following doctor’s orders and not taking control of their diabetes themselves).

1 Like

I’ve told the story here before but I went through virtually the same thing when hospitalized for 3 days after major abdominal surgery. I dug in my heels, and eventually got a compromise where they let me set the dose but then they would administer the shot. Which was absurd, so they just let me do it anyway.

There have been numerous threads on this in-patient issue as you probably know, but for someone seeing this for the first time, my summary would be:

  • Many (most? all?) hospitals as a matter of policy (because: malpractice insurance?) will not let anyone in their care administer his/her own medication, including insulin. Frequently they will be clueless about carbs and dosing–too complicated and unique to each individual–and thus will administer R/N insulin on a sliding-scale basis (i.e., sheer guesswork) originally formulated in the early 1980s.
  • If it’s planned surgery, it IS possible to coordinate with your dr and the hospital to work out a written arrangement ahead of time to let you manage your own.
  • By and large this problem only seems to apply to people on MDI. People using a pump don’t seem to run into this problem, likely because a pump is considered a prosthetic device and so doesn’t count as “administering your own medication” the same way an injection does.
1 Like

Thanks for telling your hospital story, @Cinderfella. I read accounts like yours with equal parts interest and alarm. You would think that the professionals who work in a hospital would be ashamed of the care they give people who use insulin to treat diabetes. They all take pride in their individual credentials and the hospital observes that hierarchy.

Why don’t they understand how incompetent they are at dosing insulin? I have not had any overnight stays in the hospital since my diagnosis 34 years ago. If I were faced with a discussion with a hospital medical person regarding whether I should be allowed to dose insulin if physically and cognitively capable, I would hit them with a ton of questions.

  • Do you agree that normal blood glucose is required to enable healing?

  • Do you agree that hyperglycemia puts me at an elevated risk to become a host for a super-bug?

  • What protocol will you use to treat my diabetes? Will you use the archaic, reactionary, ineffective sliding scale in any form?

  • Will you follow my current insulin to carb ratio to control your bolus amounts? Will you use a basal bolus regimen that includes a long acting insulin, and a short acting insulin calibrated to the carbs I eat?

  • Will you use pre-bolusing so that my post-meal blood glucose will not skyrocket and put me into a blood glucose roller coaster?

  • How many times per day will you check my blood glucose? Will you correct high blood sugar? If so, explain what calculation you will do to figure the correcting dose.

Since hospital medical professionals are supposed to be the experts at this, I expect a level of care at least equal to what I give myself. If you cannot demonstrate a level of knowledge and competence with dosing insulin, why should I let you assume my glucose metabolic care?

If they cannot verbally assure me that they know what an insulin to carb ratio is, how basal insulin works (both pump and long-acting), what an insulin sensitivity factor is and how it is used, what the onset time, peak time, and duration of action of the insulin that they propose to use is, then I would refuse to allow them to assume my care.

I think I would likely seek a heart to heart talk with the hospital and my doctors about these issues before I planned any elective procedures that involved an overnight hospital stay.

3 Likes

Sadly, hospital workers probably encounter far more patients who “cannot demonstrate a level of knowledge and competence with dosing insulin” than they do exceptions like you and other members of this forum. I’m not justifying their approach by any means, but it may be a lot easier for them (overworked to begin with) to cater to the lowest common denominator than to be able to trust that patients can indeed self-manage. And in the US, I’m sure the threat of litigation plays a large part as well. (I say that because, as @Jen points out, experiences like @Cinderfella’s are far less common in Canada, for whatever reason.)

Here’s a tip, if you can manage it. I tend to go to the same hospital where my endo is based. The one time I got some pushback, I discovered that saying, “Please discuss any changes in my treatment with your chief of endocrinology” worked wonders.

2 Likes

That’s why it’s hard to understand their reluctance to work with a patient like me who can ease their workload. I’d be happy, given physical and cognitive ability, to sign a waiver relieving them of all responsibility for dosing insulin. If they insist on taking over for me, then I will expect they have the competence and knowledge to do the job as well as I can.

I know I would present a problem to hospital staff in this situation but I refuse to be vulnerable to licensed staff who can’t even tell you the clinical differences between T1D and T2D!

I think your tip about choosing a hospital where your endo is on staff is a good one.

1 Like

As someone who practiced law for 35years, I can’t think a a quicker ways for any doc or hospital to commit malpractice than to deny a diabetic the right to determine his own insulin and food intake.

5 Likes

I was a wealth of knowledge sitting in that bed. They never even asked me. I would have been willing to consult with them for each meal and work out a dose. It was just brought to me - 2 units - without any consideration of what my blood sugar was at the time, what the food was, the time of day, etc.

1 Like

But, as I said. I have been hospitalized before where I was allowed to manage my own blood sugar. This has been the one exception. I’m never going along with that again.

1 Like

I live in Canada and every single time I have been hospitalized since my diabetes diagnosis 52 years ago I have had to fight the same battles with moronic nurses and doctors who know absolutely nothing about diabetes management, but are completely certain they know everything that can possibly be known about it. One time, after the staff had arbitrarily given me a dose of insulin bearing no relation to my requirements, I asked the resident, “Do all diabetics require the same insulin dose every day?” She admitted that they did not, and then I asked, “Well, given that fact, how could you possibly know what dose I would require in those circumstance, since you don’t know anything about how I would respond to such a dose or what my basic requirements of insulin per calorie are?” She shrugged and said, “Well, it’s still my duty to inform you that the nurse is bringing a formal complaint about your behavior as a patient.” As it turned out, she didn’t, and just as well for her. Then, several hours later, when I was officially released, the staff slow-walked the delivery of release papers, delayed the i.v. in my arm, and did all sorts of other rude things to punish me for standing up for my own health against their stupidity.

On another occasion, the ‘doctor’ refused to allow me to have any insulin at all for breakfast, on the reasoning that “since you were low yesterday, we’ll just hold the insulin until after lunch and see if you need it then.” I pointed out to him that since insulin is necessary for metabolism, we might as well throw the breakfast in the toilet as feed it to me for all the good it would do, and only then did he start to think. The next day during grand rounds, at which he attended, I delivered a vigorous criticism of his therapeutic intervention the previous day, and the professor leading the rounds turned to him and said, “Did you really do that?” He mumbled some confused defense and got a well deserved glare from the professor.

4 Likes

I assume it’s a blanket rule applying to all meds a patient might take because the staff have taken on responsibility for the patient, and they aren’t writing in exceptions for individual medications, e.g., insulin, because that’s not how bureaucracies work.

2 Likes

Doctors typically don’t like to admit that they don’t know much about handeling type 1 diabetes. It’s because they have learned to act like they know everything, because most patients don’t like it, when they feel that their doctor isn’t in control. People who have had type 1 diabetes for more than one year are different though, and good doctors know this and act accordingly, by asking the patient to SHOW them, so they can learn.
What I have found is that it seems to head the other direction. Doctors and nurses order me to control my diabetes while in hospital. There is no dialogue and I’m on my own. This was particularly hard when I was in hospital after my daughter had been born. I don’t remember how I managed, but I did.

1 Like

As with doctors, hospitals are all different. My last time dealing with what we thought might be a heart attack, I was never admitted but kept in observation overnight to do tests the next morning. They asked me to disconnect my pump and turn control over to them. I of course refused and told them either I do what I always do or I will check myself out. (All early tests showed no heart attack, i’m Not a complete idiot!) so 30 minutes later a CDE came in with a mess load of papers and forms for me to fill out. All pretty out dated, like any of us use the same carb ratio for the whole day! They wanted my blood sugar at around 150going into the ultra sound stress test and thankfully with my pump still connected, I came in at target due to the fact I suspended overnight for awhile. When I checked in with my endo later, he was very surprised no one from the ER called the endo on call. But this was the first time with this hospital system I got a little bit of a push back, but I think once they realized I knew what I was talking about, they let me do my thing. I’m sure they just think it’s easier for them to do it all but really, if i’m Doing everything, all they have to do is record. Go figure

2 Likes

Actually I’m pretty impressed that they wanted to know I:C ratio at all. That indicates they’re thinking in terms of carb counting and tailoring doses at every meal, which has to be done differently for each meal and each insulin-dependent individual. Obviously that’s what they should be thinking of, and they certainly tailor other medications to things like patient’s size and weight, but that’s still comparatively generic. My impression is that they usually just have some kind of sliding scale so they can administer insulin in a way that’s less crazily variable and more similar to what they’re comfortable doing with other medications.

I once fired an Endo that was put in charge of my diabetes during a stay at a local hospital that my regular endo didn’t have privileges for. I had to convince the hospital adminstrators that I could manage on my own. Once I did that, I got things back on a reasonable keel. I still think about that STUPID endo. Grr!!

2 Likes

I’ve absolutely been there. I still remember her to this day as the “chipmunk” nurse… haha that was my nickname for her. She was very spunky, mean and loved to try to stab me with any needle and hold me down. I was begging for insulin at 300 plus the entire visit but miss chipmunk had other plans. I do remember her almost hitting me once, needless to say I reported her afterwards and she no longer works there. I did the right thing as I can only imagine how such a nurse would treat elderly patients.

1 Like

Just wait until you see what you were charged for those 2 units!

2 Likes

Lol

Yes, that thought crossed my mind, that the only reason they wanted me to take their insulin and fingersticks was so that they could charge me for them.