Diabetes Care in the Hospital: It Ain’t Pretty (Diabetes Mine blog post)

Diabetes Care in the Hospital: It Ain’t Pretty

By MikeH of Diabetes Mine

Two ER visits within two days, thanks to a severe low blood sugar and then non-budging high blood sugars.

Both are enough to make anyone with diabetes cringe. But then there’s the fact that these experiences themselves highlighted how the urgent care establishment is ill-equipped to deal with diabetes.

And it gets even more troublesome.

I’ve long believed that we PWDs (people with diabetes) aren’t going to get quality care in the emergency room if we end up there. From the Diabetes Community stories I’ve heard, opinions of medical professionals in the diabetes world, and my own experiences visiting ERs on a few occasions through my life, that is what I have come to believe.

Sure, it may be more sarcastic than serious to say “the ER is trying to kill me,” but there’s certainly some real-world trauma weaved into that comment. The recent dual ER visits that my mom experienced reaffirm this, and I just want to share this story as a way to call out for whatever change can hopefully materialize …

I’m not happy with what happened in the ER relating to my mom last week. But more than that, it scares me that this type of thing could happen to any of us.

Read what happened to Mike's mom

Many of us have stories about the challenges, fears, dangers and frustrations of having diabetes in the hospital. Share yours below, and some ideas (if you have them) about how to improve the care of PWD during hospital stays.

A couple years ago I needed a minor outpatient procedure, not related to diabetes. I had new insurance and all new providers, so this was the first time I was seeing the doctor who would do the procedure. I fasted for 24 hours and then arrived in the clinic early in the morning with a blood sugar of 380. Upon seeing that, the nurse who had gotten me set up in my hospital "gown" and IV excused herself for a moment, came back, and began tinkering with the IV. I asked what she was giving me and she said "insulin".

Here's what I thought: "Like hell you are! Who the %^@$ are YOU, giving me insulin without consulting me first?! And who the #@%^ told you how much I need, because it most certainly wasn't me, and NO ONE else on earth knows how to calculate insulin doses for ME!!!"

Here's what I said: "Hang on!! How much are you planning to give me?" She said 10 units. "Absolutely not! That's 30% of my entire daily dose, AND I haven't eaten in 24 hours, AND I'm about to be sedated for an hour. 10 units right now would be disastrous for me." To her credit, this gave her pause. I was wearing an insulin pump, so I convinced her to let me handle the hyper myself (2.75 units... and I awoke at 75 an hour later). I also let her know that NO ONE had my permission to give me insulin during the procedure.

Turns out the doctor doing the procedure, who is not an endocrinologist, told her to give me the 10 units. So I called him the next day... and we had a good conversation. I told him I thought he had no business prescribing insulin, and that the only person who knows how to dose a person with diabetes is that person. I told him if I had not stopped the nurse I could have had a catastrophic hypo during the procedure. He apologized and said he is used to patients who are insulin resistant, and for whom 10 units is a conservative amount. I told him it doesn't matter. We're all different and you can't "ballpark" a medication that could kill a person (duh). I think he heard me. I sure hope so.

Wow, Emily, that is a very scary story. You are lucky they didn't overdose you!!
Good thing you had the sense to question the nurse about it because they were obviously going to give you a huge dose of insulin without telling you. Really crazy! I think this type of thing happens all the time in hospitals unfortunately. Maybe we should all discuss ahead of time in this situation that under no circumstances is anyone to dose insulin or glucose to us without discussing it ahead of time unless we are severely hypo and out of it or not conscious. The problem is a lot of the time they don't listen even when you tell them. I have seen mis-dosing and mis- prescribing of other meds too, 2-3 x with my father in hospital. Twice he was given a beta blocker, after telling them not to give it to one him due to his asthma(causes severe asthma), once he was given a narcotic pain med(causes severe nausea)and once he was almost overdosed on a med to slow his heart down when he went into Afib, fortunately that time, the nurse told the doctor to lower the dose before it was given.

Hi Emily. I just spent five days and five nights at the hospital for an emergency operation, non-D related. I thought their insulin policy was weird: no basal, a glucose meter check every six hours and a resulting correction according to a sliding scale. I immediately thought: DKA! When my doctor visited me, I asked for Levemir, which he immediately prescribed. He cut my usual total in almost in half, which was perfect. Now, almost 3 weeks later, I'm not yet up to my normal Levemir dose. I have a great doctor; my hospital's policy is, well, weird. (I have to say gratefully: the hospital did save my life--I'm not complaining.)

Trudy, I hope you are feeling better, good thing no dka. I will never let them manage my insulin if I'm in hospital again. Many hospitals have crazy policies. Hopefully I will never go again for anything serious.

In the book Dr. Bernstein's Diabetes Solution (2011 edition) Appendix B page 482, he has a letter he has developed for planned surgeries or hospitalizations. It's really worth taking a look at.

And I'm so glad that you were okay, Emily! And your dad, mee, and you, Trudy!

Best wishes,

marty1492

Hospital= scary for PWD( see my recent post : Quick fall on the ice"). Many hospital personnel have little to no experience with type 1 PWDs, even less with type 1 PWDs on pumps. Two weeks ago,I had a letter requesting to not get extra glucose in my IV while undergoing out-patient orthopedic surgery, unless I was dipping . Yet,they did it anyway, while I was under anesthesia. I had to battle high blood sugars as a result, for hours post-surgery. I wonder if Dr. Bernstein's letter would have helped. I doubt it, as Mike's blog recounts and my recent experience withstanding; hospital policy and the anesthesiology team's experience lead to the final call, regardless of what the patient says or desires.
I remember another time, several years ago, being in the ER as a result of a viral stomach flu I got from the little touchy feely kiddies at school: I had been vomiting for hours. My acting-as-PCP-that-day endo had sent me to the ER with a note requesting a slow saline drip with potassium and electrolyte replacements.The ER medical personnel were amazed that I presented with a blood sugar of 123, was not in DKA which they initially insisted I had despite the note from my endo; and all crowded around to stare at my insulin pump, including the young doctor in charge. "And she knows how to dose herself and correct!"; I heard one of the nurses say, in amazement. They all told me they had never seen a PWD in the ER with normal blood sugars; nor one who had any experience with having normal blood sugars. I left feeling much better after the treatment and my chance to BE the "teachable moment.'

Mike's story about his mom is horrifying but typical..something must be done. We Type 1's are a medical anomaly to many in the medical profession, and the confusion about insulin resistance and insulin se3nsitivity can lead to disastrous effects. The bottom line, in this litigious society, is that many hospitals "appear" to want to cover their own B**tts at the patent's expense.

How very unfortunate.

God Bless,
Brunetta

I think a big issue with hospital treatment of PWD is communication. I read medical records at work all day and, while I can't talk about specific cases I've seen, I think that it's reasonable to state that the shorthand method of communications in medical orders is woefully inadequate to provide tactical solutions to diabetes management dilemmas.

If you are in, like Brunetta for a broken ankle, you get a report from a surgeon, maybe a couple pages long with the interesting details of him putting her back together again and an order to test BG and an order to administer insulin (and painkillers, check vital signs, monitor input output and a bunch of other stuff...) but I've never seen an order address an IC ratio or target or anything "normal" that we would take for granted in running our own shows. I've also seen many reports here on Tu, FB, etc. of PWD who, put into a hospital setting, run into problems because they are told they won't be allowed to run their own show. I've never tried to explain to Mrs what to do so if I get run over or something and am out of it, I'd probably be screwed too but my experience with outpatient surgeries has always been to have my pump on and her waiting with my meter. Fortunately, I have plenty of experience testing my BG while I'm zonked out of my gourd so when I wake up, my first thought is to test my BG and my CGM and all that to see what's going on. If you are on MDI and are more of a follow directions person, there's ENORMOUS trouble.

Maybe this would be a good project for this year. A "What's up Doc?" campaign to get doctors particularly in hospital settings but maybe elsehwere to recognize what we do and the criticality of engaged approaches to manage diabetes. Surgery is stressful for anyone but, if a medical facility is basically attacking you with their hamfisted diabetes plan, they need to be told off. Perhaps part of the problem is that standards of care for diabetes are so lackadaisical that having yutzed up blood sugar can be written off by a doctor as "no big deal. You people *always* have yutzed up BG anyway" but this is completely untrue. My BG is pretty rockin' most of the time.

http://www.diabetes.ca/documents/for-professionals/CJD--Sept_2011--...

"Evidence has mounted that sliding-scale insulin leads to an increase in blood glucose and an increase in serious hospital morbidity compared
to basal–bolus–supplement."

An article from the Canadian Journal of Diabetes. From what I can read, it supports letting a patient, of sound mind, deal with their diabetes and supports doing away with a sliding scale. If I ever have to be an in-patient then I cannot imagine letting the hospital dictate how I will treat my diabetes. Most of the nurses I know are ignorant about diabetes and cannot distinguish between the different types, let alone know how to treat things.It's very scary, indeed! :-o

I do so agree, Acid. I like your term"the criticality of engaged approaches to manage diabetes". It is critical that the informed and aware PWD who is a in hospital be allowed take part in self-care.
Yes, we are expected to have and to accept "yutzed" up blood sugars while being treated in hospitals

God bless,
Brunetta

Just looked at it; excellent letter! I will bookmark it for future reference.

I remember I had to go to the ER because my pump decided to poop out on me at 5am, and all my "dooms day" insulin had expired, so I needed to get more insulin pens. In the ER, the doctor saw me and basically just said, "Tell me exactly what you need. I don't deal with many people with diabetes, so I don't know what to write on the prescription." While I was very happy that he wanted to know exactly what I needed, I was kind of flabbergasted that he had essentially no idea what an insulin pen was! I feel like that's basic knowledge any doctor should have, but apparently not... That certainly needs to be changed!

So i am in the hospital, with a lupus reaction to the RA meds. I cannot lift my hands or stand for anyone to touch me. It was the most awful thing.

Well we had to leave home quickly 103 fever, it was goign bad quick. So we get to the ER and my BS is goign out of control, along with everything else. So I could not touch the pump and luckily i got Sheryl to deliver some insulin. Here come the nurse and she demands to knwo my basil rates every hour of the day. I told her to go to a different place in the hospital. OK not really there but close. ok you knwo where i told her to go.

The doctor comes in and he says i had abused the nurse. no I said I am not able to operate my pump and unless I can I cannot tell her what she wants and why did she want it. Well we discuss it and he leaves not to hear form it again.

So I get to he floor 6 hours later. by then it is impossible to move it hurt so bad. Well my pump had less than 50 U in it. I asked for insulin to put int he pump and she said no, since it as my pump she will not give me any, unless i disconnect it. Well so I sent Sheryl home to get it and come back a few miles, and when she comes back the nurse is upset because we brought insulin in ot put int he pump. I threaten to call the endo on call at my practice and she backed off.

i really like the hospital but this pump phobia is insane. Nurses no nothing of pumps and worse yet they are afraid of them, I suggest they get some training or something.

Gawd, all the replies here are not even half of the issues regarding Hospitals vs patient care.

I have literally been arrested and forced, up to and including being cuffed while in a low blood sugar reaction, forced to go to the hospital. At the hospital I was FORCED to accept their care, despite having signed papers there stating that I did not wish their care. And of course, since I was arrested for being sick, the insurance company refused to pay ANYTHING towards the various bills... over 5k lost out of my pocket for care I did not want, nor receive. That happened to me twice in the same week when I was sent to NY by my company and was working 20 hours per day... not eating enough apparently even though I was eating enough to feed 3 people... the long hours was what got me into trouble.

I have been admitted, again against my wishes, because my BG was over 800 (bad bottle of insulin) and had the Dr order glucose IV and NO Insulin at all, on a Friday night, and the hospital refused to contact that dr until monday. By then, I was of course in a coma. My GF had brought in my insulin, pump, meter etc, and they confiscated all of it, refused to give it back until after I was released... actually refused for an additional 4 days beyond my release.

I was once accused of being a drug addict and locked in a psych ward for four days, because the friggin idiots refused to accept that the needles in my possession on admittance were strictly for injecting of the insulin that was in the same pocket of my jacket. Of course, 4 days after being admitted, and forced to accept the Dr's care, I was now well on my way into a diabetic coma again, because they refused to administer enough insulin to bring my BG down.

When they removed my leg, they refused to give me pain killers since I was admitted under the psych ward initially as a drug addict, DESPITE completely clean blood tests other than high BG. Once that "note" is put on your patient record, you can never get it removed. It will follow you to any further medical treatment you seek since everyone BUT you has full access to your medical records.

Oh... I have dozens of stories like those and other major issues as well.

Bottom line? Don't ever go to hospital unless you wish to waste time, and go home sicker than when you went in.

Also note that these are not isolated city or state incidents, I have had serious issues in every hospital across the country, MD, NY, PA, WVA, VA, MO, TN, CA, OK, and I am sure I am forgetting one or two more states...

Unfortunately it is not just hospitals. I went to see a new ENT a couple weeks ago about a Nasal Polyp. I gave a full history and after the doctor did his exam he told me he was going to prescribe massive (his word) steroids and antibiotics to shrink things down a bit. I informed him about my diabetes and the difficulty (and sensitivity) I have with steroids and how a massive dose of steroids with antibiotics would put me in the hospital in DKA. He called me brittle and told me he does this all the time with his diabetic patients. All I could think about was how nice he was 2 blocks from the ER. I bit my tongue and talked him to just the antibiotic and a topical steroid spray. Some doctors get offended if the patients know their history and question treatments that would harm them.

ouch

I have had a bad experience with hospitals, too. I went to the ER for a blood sugar of 380 one day when I didn't realize that my cannula kinked under my skin and my blood sugar wasn't going down. When I told them I was a T1, they stared blankly at me and then told me to wait. What seemed like forever later, a nurse came in and said she was going to give me 10 units of insulin. I told her I couldn't take that much or I would severely go low. She said that was protocol based off of their sliding scale. After arguing with her for a few minutes, I finally convinced her to only give me 2 units. They then told me that I was going to have to stay overnight for observation, but low and behold, my blood sugar came down to normal after the 2 units and I was let go.

That experience wasn't terrible and definitely could have been worse, but it really scared me at how little the doctors and nurses knew about T1. And it REALLY scares me to think about if I were in a situation where I couldn't control myself, I don't have trust that I would be well taken care of.

This whole situation cries out for some major reeducation of our frontline medical professionals. The fact that some doctors and nurses don't understand the critical difference between T1 and T2 just astounds me. And they don't even to appear to understand the limit of their knowledge! They don't know what they don't know.

Perhaps we need an initiative headed by our advocate agencies like the JDRF to spearhead this program. Every working medico worth their salt should be conversant in I:C, ISF, basal/bolus regimens, and how an insulin pump works. They should understand the nature of various insulins as well as their properties like onset, peak, and duration. And the biggest thing in my mind, they need a healthy respect for the knowledge and ability of their patients that dose insulin 24/7/365!

What a horrible, harrowing experience, rick!

I have to say, I'm SUPER protective of my pump, and my insulin dosing decisions. I've been lucky that I haven't had a hospital stay in a while, so I haven't been challenged about my pump (other than by FSA, of course), but just the thought that someone else would either want to take my pump off me, or dose me with it themself, makes my heart race with anger.

Holy cow, Trudy! I didn't know you'd been in the hospital. I'm so glad you're out and on the mend, and that you have a wonderful and reasonable doc!