Diabetes Mismanagement by Healthcare Professionals?

I recently received this message from Tara, who, through some difficult family health struggles, has been inspired to make a difference.

I was diagnosed with type 1 in May of 1986 and my family is full of type 1 diabetics, including my brother (diagnosed at 19 years old in 2001), my uncle (diagnosed 53 years ago), and my grandfather.

My grandfather was diagnosed as an “Adult Diabetic” in 1998. In my non-medical, yet long-time diabetic, opinion, he was misdiagnosed as a type 2 specifically because of his age. He is a very thin man, and needed insulin from the get-go. There is one old-school endocrinologist in his town, and again in my opinion, not fully educated on advances in diabetes.

In recent years, my grandfather’s blood sugars have been all over the board and his health is on a speedy decline. He fell a few weeks ago and it landed him in the hospital. Dementia started setting in…blah, blah, blah. At one point, he was moved to the geriatric psych ward in an effort to get his dementia in a controllable range.

On Friday, they called a rapid response team in because they were sure that he was having a heart attach, stroke, or something else along those lines. Fortunately for my grandfather, his DNR was not on file at the hospital, and eventually, they got around to checking his blood sugar. It was 35 mg/dl.

Following his reaction, he was exhausted and not communicating for a couple of hours. Unlike everyone else working for the hospital, I felt like this was a pretty normal thing for an 83 year old diabetic with dementia. After a few hours, he was alert as could be.

The next day, I made the trip to Ohio to visit him. My diabetic uncle was there as well. At one point, a nurse came in and checked his blood sugar- It was 176 mg/dl. He proceeded to eat lunch. The nurse came back in an hour or so later to recheck his blood sugar. This time, he was at 283 mg/dl. She proceeded to tell us that she was not going to cover the high with insulin and that because of the low blood sugar the day before, his family physician (not the endo) had told the hospital staff not to give him any insulin, including his lantus, that day. In addition,they had him on a dextrose drip.

Upon hearing this, my uncle and I started questioning the nurses about everything that had happened in the last 24 hours. Never once did they call the endo. When I explained that Lantus was his basal insulin and that he needed that regardless of whether or not he ate anything, the nurse looked at me like I was speaking Greek to her. The endo got a phone call from the hospital shortly after this discussion.

The nurse ended up covering the high, and his diabetes care is somewhat back to normal. The nurse did come into the room and apologize to me, stating specifically that she was not well educated in diabetes. I told her that I got as upset as I did not only because it was my grandfather’s life at stake, but also because it scared me about what might happen to me one day.

And now, the mission…

My uncle and I were horrified by the lack of education and knowledge of the hospital staff about type 1 diabetes. It’s not like type 1 diabetes is uncommon. How do we go about educating non-diabetics, especially those in the medical field, about type 1? Are there any groups, that you are aware of, that focus on this type of education? Do you know of a starting point?

Obviously, Tara is concerned about the health and care of her grandfather (rightfully so).  But her mission is much bigger than that.

She wants to find a way to get some basic diabetes education to all of the healthcare professionals that might be taking care of us if we are unable to care for ourselves.

Do you have any scary stories about you, or a loved one with diabetes, who’s diabetes was mismanaged in a hospital or care center scenario?

Where does she start?  Have any of you tried doing something like this before?  Please share your thoughts and/or experiences around this.

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23 thoughts on “Diabetes Mismanagement by Healthcare Professionals?

  1. PWD new-nurse here. yeah, it’s really scary and really frustrating. mind boggling how bad it is. i think there are a lot of factors involved. nurses don’t know that much about diabetes. they are scared of lows. insulin is complicated, there are a lot of different kinds (many came out after some nurses have been long out of school), and type 2 not type 1 is stressed in nursing school. besides being not well informed, nurses sometimes have little control over protocols and increasingly are super overworked and don’t have time to adequately take care of all their patients. any doctors other than endocrinologists that do diabetes or doctors that happen to have a loved one with T1 don’t know much about the day to day.

    i was overwhelmed by how bad it is. horror stories include a T1 who was given half their normal lantus dose because they were going to go to surgery (this is normal & OK practice) but then the surgery got rescheduled. they didn’t get any coverage for breakfast because “their blood sugar wasn’t high, so they don’t need a correction” (hello we T1s don’t make any insulin, we need it for all meals!). blood sugar even higher at lunch, got a modest correction, and was super duper high at dinner. patient was blamed and given a talk about how the lasagna brought in by friends was bad and they shouldn’t have eaten it (they ate probably 20-30 carbs’ worth, max). and many other stories to make your blood boil.

    i think one tool that patients & their loved ones/advocates can use if it seems like diabetes is being really mismanaged/not understood, is to ask for an endocrinologist consult. they may or may not take you seriously, but just getting someone in the picture that knows what they’re doing and knows the hospital system can be helpful. many specialists – including/especially surgeons – REALLY don’t know about managing diabetes, and are sometimes too cocky/uninformed to call a consult when they need help managing another aspect of the person’s health. if you are in a small hospital and they don’t have endocrinology and another surgeon/specialist is taking care of you, a “medicine” service consult might be the next best thing.

  2. I just came across this blog and I must say, it is great! Reading through all the stories I came across this one and had an overwhelming sense of commonality with it. About 10 years ago I experienced a situation where it was obvious that the staff at a hospital I was admitted to was not very familiar with treating type 1 diabetics. I experienced a low blood sugar in the morning before breakfast and instead of treating the low and giving me my normal dosage of (at the time) NPH and Humalog, they completely forewent giving me ANY shot. Therefore, I was left without having any short acting insulin to cover the meal I was brought and I had no long acting insulin to cover the rest of the day. I PROTESTED and PROTESTED and demanded that my Doctor be called immediately. The call never happened and due to the fact that I knew my blood sugar would go up I decided not to eat. When the next nurse on shift came back to check my glucose at lunch, I tested at over 400. I voiced my concerns to my Endocrinologist the next morning during his check-in and he apologized and told me that unfortunately that floor didnt typically see type 1s and didnt know what to do in that situation. What I think bothered me most is that the nurse never came back and said a word about it or apologized. It was as if they treated it like it never happened.

    Needless to say I filed a complaint with the Hospital

  3. Thank you ALL for sharing your stories. Out of all of these comments, we’ve heard of only a single positive experience (Pat’s friend). So damn scary.

    I hope that somehow, some of these stories find their ways to people that can make a difference.

  4. OK, you wanted a story — you get one.
    At the end of August, 2010, after a couple of months of climbing BGs, which I was unable to control, I saw my endo. My fasting BG was 302, A1c 10.7 (really high for me), liver enzymes in the 100’s (normal is less than 40) and I was suffering increasing mental confusion, and blackouts, which I was unaware of. He did nothing; just sent me home. 6 days later, I didn’t show up at a picnic I was supposed to attend, and my friends came looking for me, and found me near comatose. The last thing I remember is them calling my name from outside the door. Good thing I leave my door unlocked, because they came in, found me, and somehow got me into the car and to the emergency room. The ER DID save my life, after testing me for drunkenness, drugs and dementia — the wrong 3 D’s. All my systems were out of whack, and I was in acute kidney failure. So I was admitted, and remember nothing for a day and a half. According to the CDE on the case, they took a look at me — age 62, and decided I was a Type 2, and started me on Type 2 protocols. Which meant insulin only to correct highs, but no basal and no meal coverage. And then, couldn’t figure out why my BGs were going up instead of down. The reason for the Type 2 protocols is that they expect the patient’s own body to bring down postprandial highs, which is almost always the case in early-stage Type 2’s. So the CDE fought with them to get them to use Type 1 protocols on me. Whereupon, my BGs started to come down. Then, because I was no longer acute, they sent me to a rehabilitation hospital AKA Alzheimer’s home, which assured them that they knew how to take care of diabetics. Ha! I arrived there on a Friday night, and the hospitalist was off until Monday, and somehow the Type 1 orders didn’t accompany me. So back to the no insulin except for corrections, and going up into the 400’s after meals (and I was eating only protein, because I knew that carbs would just blow me sky higher than I already was), and they just let me sit there with miserable highs for hours, because it wasn’t time for insulin yet. And I couldn’t corner the hospitalist until Monday, so I was pretty much back into the place where I started, with confusion, hallucinations and blackouts. Worried about going low? HARDLY!!! Finally, I got to the hospitalist, and convinced him I needed a basal, and boluses before meals, and he put me on fixed doses — wouldn’t let me take control for myself — I’m sure he was used to dealing with passive, demented patients. So I ate as little as possible, and slowly, slowly, my BGs started to come down. But I was there for THREE frickin’ weeks (plus the week in the acute care hospital), when, if I had had proper treatment to begin with, it should have taken no more than a week to recover sufficiently to go home. Fun with spending unnecessary money, and Alzheimer’s patients are SO much fun to spend all your time with. As soon as I got home, I found myself a new endo (Type 1 himself), who immediately figured out that my insulin needs had changed radically, and put me back on my pump. I have since gotten things back to normal. But I am terrified to ever go in the hospital again, even though I really needed it at that time.

  5. After a suicide attempt last fall (I shot 4 pens of Novolog into my inner elbow) I suffered through 24 hours in the ER where they got my BS up. Then I was admitted into a locked mental ward and had no way to control my own diabetes. I was over 200 for 4 days, sometimes in the 300’s. No one had a clue about T1. I am doing well now. Seeing therapist weekly and feeling much better mentally and spiritually. Depression is a big part of this disease for me. I was dx at age 50 in the throes of menopause, etc.

  6. I’m a type 2 but I have also had problems with medical staff. I’m very fortunate that the hospital I primarily use is very forward thinking and usually allows me to manage my own diabetes. After my last surgery (for cancer) I had trouble getting my numbers down for the first day. I was still pretty doped up so I wasn’t thinking cleary, but I finally figured out that they were NOT putting saline into my arm, it was glucose! I told the nurse that I didn’t need all the extra sugar as it would impead my recovery not help it. She immediately spoke to the hospitalist and the bag was removed. It was on my charts that I’m diabetic and they still thought pumping sugar in was a good idea. I’m teaching them, one doctor or nurse at a time…

  7. I’ve had to advocate strongly for myself a number of times. Once I was going in for a small procedure and they wanted to disconnect my insulin pump. I told them I would not have the procedure if it meant taking my pump off me.

    This was in a mid-size community hospital that takes pride in its standards of care. I never though of the long-term implications. I wonder if there’s some way of putting together a booklet Advocating for your diabetes care while in hospital?

    • I’m a nursing student (and PWD)and while I never actually trusted nurses with my D-care(prior to nursing school),from my clinical experiences,I now know I never will. Thus far, much of the “diabetes education” has been a five minute blurb and instructions on performing an injection/doing a blood sugar. They don’t go into the basic physiology of insulin requirements(bolus/basal), they don’t go into what actually influences a blood sugar, they don’t go into practically anything.Nursing school is a 2 year experiment in stuffing as much knowledge as possible into the brain,and hoping some of it sticks.(hundreds of meds,procedures to learn)Unfortunately, type 1 gets the short stick & patients don’t get the care they deserve.Good(competent) nurses do exist (when I was in the hospital once one went to bat against the surgeon for the right to keep my pump on) but the best thing patients can do for themselves is to have an advocate to stick up for their right to treat their diabetes (or access to an endo) themselves.Alot of the stupidity has to do with protocol,and trying to avoid hypos at any cost.(so much so that it goes well into the opposite direction) More education is definatly needed.(it should be a mandatory continuing education requirement, to take a periodic class taught by a CDE-IMO)

  8. Scott – I can’t thank you enough for what you are doing. I am Tara Sanders mother…she is the one who wrote to you about her grandfather…my dad. I have a family of diabetics and many friends. Unfortunately these stories are everywhere. I am hoping someday to find someone with diabetes who has had a GOOD experience in the hospital. I had lunch today with a friend of mine who has had several terrible stays in hospitals as a diabetic herself. She shared with me that her recent stay at the MAO Clinic was incredible and is working with them to try to get their diabetic patient procedures into all hospitals. She said that the MAO Clinic has it down pat. Thank you…and I will see that she also gets your facebook page in her favorites.

  9. I have had my insulin withheld from me a couple times when I was in the hospital. My favorite was when I was going thru my foot wound. My BS was up so I took insulin to try and get it back down. I was sick because of the infection and ended up in the ER that evening. While in the ER, my BS started coming down but did not even get that low. I was admitted close to midnight and they informed me that the doctor did not want me to have insulin (Lantus) because I had a low in the ER. The next morning, my BS was sky high and the doctor that withheld my insulin came strolling into the room and made a comment about how high my BS was. I told him it was high because he withheld my insulin. That was the end of the BS conversation.

  10. These stories are all too familiar. My very first dose of insulin was in the hospital. I suffered a severe low because the lunch cart was late. I overheard the nurses actually laughing about how all the diabetics had reactions that day because of this.

    When I had my 3rd child, I ended up in the cardiac unit. The nurses there had no idea what I should eat and how to handle it when I had a low.

    After the first incident, I decided to never place my health into anyone’s hands again. The second time, I was too sick to do it myself and it happened again.

    I wish now that I had written letters to the hospital on both of these occasions. Maybe it would have inspired some retraining and helped the next patient in my position.

  11. One of my favorite stories to tell about my dx hospital stay is when one of the nurses and her student came in to give me my insulin shot. The student gave it and said “oops” in the process. As they walked out of the room I could hear the nurse say “whatever you do, never say oops in front of a patient”!

  12. Thanks for sharing this post (and comments). These are important stories. We are starting a new Masters program in Diabetes Education and Management at Teachers College, Columbia University in the fall (www.tc.edu/diabetes). I will make sure we spend time on this topic of health care providers’ fear of insulin and how we can reach the most people with the critical message that people with type 1 need insulin no matter what. In the meantime we must continue to advocate for ourselves and others at every opportunity!

  13. I find the issue with your grandfather most troubling, because sooner or later, many of us will be old and it leaves me wondering what kind of care we might receive in nursing facilities. Not very comforting.

  14. This has sparked my interest to ask my sister who just took her nursing boards last July what was asked about T1 D on that. I know she spent HOURS studying a variety of different drugs and what their complications or side effects can be. I wonder if there was a section on insulin or basic T1 D care like “Below what BG is it considered hypoglycemia? How would it be treated? Should a T1D patient be served lunch without insulin?”

    My mom is also a nurse for an adult day center. Many of her patients are developmentally disabled adults with T1. She recently told me that she has learned quite a bit on how to better care for them or even questions to ask their doctors to help them better manage their D.

    We should keep in mind that healthcare professionals have an extremely difficult job. They will see patients with a WIDE variety of chronic conditions (heart disease, diabetes, other autoimmune, etc.) that may not be best treated by using standard protocols. That said, I completely agree that T1 education should be improved.

    I also wonder if our endos and CDEs should do a better job of preparing PWD and parents of CWD for the hospital or medical emergencies. Besides saying “My child has T1D and is insulin dependent”; what else should I say? Here is my endo’s number? How will we check BGs? With his own meter or yours? How will we treat the BG results? What should I be demanding to know and to be able to do?

    I don’t know but I am now inspired to find out.

  15. I once had that experience many years ago before I had the information I have now re: Type 1. I was hospitalized I believe it was in the 1970s and had eaten dinner and thought the nurse was coming with my injection. When I inquired she said I wasn’t suppose to get any, even though I wasn’t as aware as I am today about when to take insulin I knew I was suppose to get it when eating. I explained that I always have insulin at my meals and she was insistent that I didn’t need it. That’s when irony stepped in my doctor appeared and straightened out the staff and after that I was always given my insulin with meals.

  16. When I had both of my daughters, I was incredibly fortunate to have both an Endo and an OBGYN that allowed me to be in control of my diabetes during my hospital stay. I didn’t realize just how lucky I was until this last week.

    Scott, thank you so much for sharing my story! And thank you to anyone else who shares their stories and wants to help make a difference in this area too!

  17. Scary T1 Hospital Stay Story/novella?:

    In 1998, I went to Boston for a LISA conference for my company. I was walking to supper on the 2nd day and was struck by a car. I flew through the air for ~15 feet (about 3 meters) and struck my head on the curb. I was bleeding from my left eye socket, both ears, my nose and my mouth.

    And I was unconscious for ~3 days.

    I have multiple indicators on my body that I have diabetes – a necklace with a medical alert, a bracelet with a medical alert and a card in my wallet stating I have Type 1 Diabetes and If I’m unconscious, that I need insulin to stay alive and to call my endo on how to keep me okay.

    I was taken to Boston Medical Center and when I finally came out of my unconsciousness, I was feeling very lethargic, weak, was drinking water like it was going out of style and had to pee roughly every 10 minutes. I knew my BS was going to be high. I was thinking 300 or so, but when I finally got the nurse to tell me my last blood sugar — it was 798. I have never been that high before in my life, when I was diagnosed, it was ~450.

    The nurse couldn’t figure out why I was so high, and I asked if I had been given any insulin — she looked at my chart and said No. I asked if anyone had called my endo — No. I asked what kind of food they’d been giving me (through the IV) and was told a high-sugar solution to help me recover consciousness quicker. Ha!

    2 days of arguing with the Nurses that came in to see me about taking care of my diabetes (they were keeping me at 400+ because going low was “so bad” — and they couldn’t figure out why I had no energy) I finally got mad and pulled my IV cart thingie to the nurses station and started asking for my Diabetic stuff. They refused. I was “too sick” to understand how to control my own blood sugar. I asked to talk to the Nurse in charge. She refused to give it to me. I insisted that I talk to her boss. The Head Nurse’s boss refused to give me my stuff.

    I lost it. I lost my temper, and started shouting, yelling as loud as I could that they were too stupid to control my diabetes and that if they kept this up, I would die and to let me talk to someone who would give me my Diabetic Bag.

    Finally after about 30 minutes of that — 4 nurses, 2 orderlies, and a security guard later — the head of the “trauma” unit came down to see me. He asked me a few questions — my basal dosage, my sliding scale for high BS, my carb:insulin ratio, what my BS has been and what it should be… and he was convinced that I knew what I was doing.

    I got my stuff, got my blood sugars under control, was more active and 12 hours later, I was out the door and going home.

    Grrr. I’m still highly annoyed at their incompetence.



    PS. I was recently in the ER for a Grade 3 AC tear (basically, my collarbone detached from my shoulder) suffered while playing soccer and they actually asked me about my diabetes and what my last reading was and what I was doing about it (it was 62, and I was drinking a Gatorade) — they were quite conscious of what Type 1 Diabetes is and how much we have to know about what we have to do to keep ourselves under control. I was most impressed.

  18. OMG when I had my twins and was in the hospital for three days after the c-section, I could not believe that the nurses didn’t know how to even use the insulin pen they were required to use. They had me take a look at it and “figure it out”. I had my syringes but hospital policy didn’t allow me to use those. Then, they didn’t understand what lantus was and how it worked. They also didn’t understand why I wanted to stay under 200 (so my c-section would heal well). Then they “lost” my insulin vial which I had asked to be placed in a fridge somewhere. It went on and on and if my blood sugar was low they wanted me to wait for the doctor to see what the best course of action was while I explained I needed sugar right away. They didn’t want me to do anything without a doctor’s consent. I had to drink my own juice as they watched, concerned that I was doing something wrong. I loved ALL of my nurses (they were the sweetest men and women on earth) but they just had a level of ignorance about type 1 diabetes that I found really really scary!

  19. We have had quite a few bad experiences with hospital staff. They seriously do not have a clue. One example: When my son was 4 and on MDI and had the flu, I brought him into the ER. I told them it was time for his insulin and they refused to let me give it to him. They said the fluids would bring his sugars down, not insulin. HUH?? This kid had large ketones, he needed fluids AND insulin. A big fight, a call to my endos home and they came in with a syringe. “How much insulin is in there?” I asked. 10 units of Humalog. DEAR LORD, my son had never gotten over 2 units before. Thankfully, I was there to stop them. Their excuse, “We were going to give it to him through his IV, and some of it would have stuck to the sides of the tubing.” Needless to say, I finally got the endo to order them to put me back in the care of his diabetes. They could do the rest.

    This is just one of our stories. I have three boys with T1, and because of past experiences I do anything I can to keep them out of the hospital. It is seriously my last resort. Pretty sad I can’t trust some medical professionals. My greatest dream would be to travel around and speak to ER docs and hospital staff about type 1. I see it over and over again in the community, if they are not an endo…they just don’t know.

  20. Sadly, this is very common. Someone shouldn’t have to have a strong advocate there in order to have the peace of mind he or she will live through a night IN A HOSPITAL OR MEDICAL FACILITY. Yet, that’s too often the case. I’ll be interested to hear if there are any coordinated efforts to address this issue.

  21. I’m terrified of having any kind of procedure that puts me in the hospital due to stories like this. My own PCP once told me I was being “too aggressive” with my management and thought a 6.9% A1C was “fine” (this was just after the ACCORD study was released). I’ve already told my husband he has to be my strongest advocate if I’m ever in the hospital, and that he can’t let the staff take my insulin & meter away from me.

    I wonder how our PWD nursing students feel about this?