I’ve raised this issue before, but I think we all could benefit by thinking this topic through before landing in the hospital.
Taking Control of Your Diabetes or TCOYD just posted a podcast that discusses the topic of managing your diabetes in a hospital setting.
Dr. Jeremy Pettus interviews Dr. Tricia Santos about this topic. She works as part of an in-patient expert team that actively manages blood glucose treatment of patients who end up in the hospital. The podcast emphasizes some very important points. Chief among these is the importance of being honest with the hospital staff about your specific diabetes management.
If your endo, for instance, has ordered a daily dose of 40 units for your basal insulin, but you have adjusted, informed by experience, down to a 30 unit daily basal rate. Dr. Santos says that hospital professionals may make recommendations based on your pre-admission insulin orders. This can have dangerous consequences!
The issue of whether the patient or the hospital staff makes the ultimate call for insulin dosing was not clearly addressed. This comes into play most often with a patient who wears a pump, and especially if combined with a CGM and an automated insulin dosing algorithm.
A dream situation for me is a well-informed about all things diabetes staff where the responsibility is shared, when appropriate, and dosing decisions are made collaboratively. My last hospital experience included me aggressively maintaining insulin dosing management while I wished that the responsibility could have been shared.
Dr. Santos seems ideally informed to help manage diabetes in her hospital but I don’t think her level of diabetes management is representative, at all, in the hospitals that we typically experience.
Do you trust your local hospital to called the shots correctly?
I think it depends on what you are in hospital for, and what support system is available to assist in your diabetes care.
I had 2 hospital stays while using pump. Both times I was allowed to keep it, except during an extended suegery where they had me on IV insulin.
I had family support, and mostly ate things from home, during recovery. Its been 10 years, but I think i had approval/orders from my endo. And had daily visit from endo, that asked a few questions and checked my cgm. (during one surgery, my cgm had to be removed, but a neighbor is a nurse there, and helped me put in new sensor in recovery.)
For meals, they offered foods from their “diabetic” menu. But I had most foods brought from home by my family, and ate some from hospital.
They were a bit more strict when on strong pain meds, and I was sleeping most of that time.
Just after surgery I stayed on insulin drip, and my BG was meter checked by staff and adjusted until meds were reduced. Overall, I was able to stay in range I was comfortable with.
I know some hospitals have a “hospitalist” coordinating after surgery care, and may be who would assist with conversations on care of your diabetes depending on situation.
But all hospitals likely have their own rules and exception policy.
Sounds like your situation during your two hospital stays was very good for you. After you were disconnected from the IV insulin, were you the person determining the insulin dose size?
Getting meals from home seems ideal to me.
Your experience seemed like a collaborative effort to me. Did you have any insulin treatment experiences where you disagreed with staff?
When I was diagnosed at age 5, I disagreed with any nurse trying to give me a shot, and was actually told if I didn’t stay still, they would get the mean nurse.
(at first, I was too weak to argue, but after a couple days, I revolted!!). My Mom says she was more scared than me, but didn’t show it. This was over 50 years ago.)
Three times I have given my care over to hospitialists. Never again. In all three occasions they have treated me like a T2. They wait until my blood sugar exceeds 300 before they will give me 3-4U of insulin. I have had to call my endo twice and ask them to intervene. It is not like I just showed up with a pump and said treat me special. Each time I have met with them pre-admit and discussed my pump, dosing and when I would get my pump back etc.
Never ever again. In all three cases, I was not able to manage my pump because of heavy narcotics. I will take my chances with insulin from now on. I will be happy to deal with the stupid nurses who run into my room every 2-3 hours and demand to know what my (insulin) settings are. I told one once that I was using 400 U per day outside the hospital. So when I was using 50U per day. She wrote I was faking diabetes.
I love what my father used to say.
“60% of all Americans die in hospitals, so what does that tell us? Stay the hell out of the hospital.”
I have read variations of this account many times over the years. It’s likely due to ignorance and fear. In the podcast, Dr. Santos said studies revealed that short-term in-hospital euglycmeia did matter in terms of shortened hospital stays and infections avoided.
I had a few surgeries in the past couple of years, and each time I very kindly insisted in advance that I am able to manage my insulin while awake and set insulin parameters for what is an acceptable “high” or “low” BG when knocked out. In all cases, my CGM remained active and my phone was by my side. I met with both the surgeon and the anesthesiologist in each case and they worked with me without any issues. It was actually an interesting discussion as they let me know about the small amount of glucose that is part of the IV solution I was given so that I could take that into consideration. These were all done in a large Boston hospital.
I have found the hospital staff to be extremely accommodating and interested that I had actually spent time researching my surgeries. It did not take long for the staff to realize that I was not being onerous, just quite precise about how my diabetes needs to be managed for the best outcome.
It’s good to read stories like yours as it shows what can be done when competent health professionals actually trust and respect the diabetic patient. It also shows that clear advance communication really can make a difference. Thanks for adding your account, CJ.
When anyone says the word “hospitalist,” I shudder. You see, my hospitalist when I had surgery for my hip fracture three years ago became my PCP (an internist) last year. That’s the clown that freaked out about my A1c of 5.4, and when I wouldn’t go along with his idea of “no more corrections” even if my BG was running over 200, “fired me” as a diabetic patient.
An incident related to that hospital stay was that the surgeon gave orders that I was to be given no basal insulin the night before my surgery. I normally took 10 units. At bedtime they did a BG test and found me at about 300. I no longer remember the exact number. I made a fuss about it, but the nurse just said, “At 300, you aren’t going to be in DKA by morning.” Then she wanted to give me a tuna sandwich as a snack before I went to sleep. Had I accepted that, what do you think my BG would have been by morning? At that point I really did throw a hissy fit. She finally contacted the hospitalist and got an order for a basal shot.
I did not yet have a working CGM with that hospital stay. I have to wonder how different things might have gone if I had it.
It most likely also helps to know the hospital policies and guidelines vis-a-vis their acceptable BG range. The hospital I use requires a 125-200 range for surgery. I tried to negotiate for 100 as an acceptable low BG twice going into surgery but was rejected, however, traded it for an agreement to not exceed 150 on the high side, I would not have surgery at a hospital that has an upper acceptable range over 200.
Most of my hospital stays over the years were planned and I was able to get my Endo to specify I should be allowed to manage my diabetes, meaning I did my own BG testing and gave myself insulin.
My only unplanned hospitalization was a disaster from BG management point of view. I had had a stroke, and my PCP told me which hospitals in the area were good for that. He was right - they dealt with the stroke quickly and competently (clot-busters) and reversed the damage. But I needed to stay for 4 days while they introduced blood thiinner meds.
Turns out this hospital had virtually no staff who understood T1D. They kind of knew about T2D. The admitting doctor wrote up orders based on interviewing me, but I failed to deman that the key order should be to dynamically adjust insulin based on BG levels. The orders were fixed in stone and I ended up running in the 300s for 4 days.
A few of the nurses had an inkling this was not right, but hospital procedures were so rigid I suspect they’d been sued and lost. Most every procedure was reviewed by a 2nd nurse. They said I could talk to their hosptialist but she too was afraid to make any changes. I called my Endo but she did not have authority to change orders at that hospital. All in all, it was a terrible experience.
We all hope we will not need to visit a hospital. If I do, I will do my best when being admitted to explain I need orders either allowing me to manage my own BG levels, or that the orders are to adjust insulin based on BG levels and the target range is 100-170. My normal range is 75-170, but all hospitals like to run a bit sweet to avoid hypoglycemic episodes.
I wish nurses were taught about T2D. I wish hospital administrators would allow procedures to manage T2D properly. Even if they will not let me manage BG levels myself, all they need is to specify the target range and allow nurses to dynamically change insulin levels based on the BG levels.
I really hope I never have to go back to that hospital.
First time I was in for surgery and an extended stay it was a nightmare. I had no idea they were going to forbid me to administer my own insulin, or even worse, handle it themselves using R/NPH and the old sliding scale crap. I’d just gotten off that regimen after 20 years and much arguing with my non-specialist HMO doc. So I dug in my heels. In the end they said I could load my own syringes and they would do the actual injection, which was silly and basically they just let me go ahead.
Ever since then I’ve been assiduous about getting things worked out with hospital staff ahead of time. Most recent extended stay, I told my endo about it ahead of time and she contacted the hospital’s head of endocrinology, and it was all set to let me keep my pump and CGM with me and manage it all myself. My impression was that they would have probably let me do that anyway, but there’s no point leaving that to chance. I think a lot of institutions are more conversant with modern regimens and equipment now than back in the oughts when I had my first run-in with this, but a lot depends on where you are, and I still hear horror stories.
If I’m conscious and able I would not want the hospital handling my insulin. I would bring my CGM and test supplies and tell them I’m doing it. I’m happy to let them prick my finger as much as they want and tell them how much I take and when.
This is the situation that determined my attitude when I, too, faced a hospitalization due to a stroke a year ago. I knew that the average hospital staffed by the average professionals had a poor track record for maintaining normal glucose levels to permit good healing. They permit the dreaded (from their point of view) hypoglycemia and protect themselves from the professional consequences of hypos at the expense of the patient experience of losing the early chance of healing.
This is malpractice from this diabetic’s perspective but I suspect that agreement with me will probably take decades to form.
In my situation I was “with it” enough to insist that I continue with my automated insulin dosing system. I was able to, with my daughter’s help, to change my pump infusion sets and CGM sites. The hospital left me alone but they chose not to help unless they were completely in charge of my blood sugar.
To their credit, however, they were tolerant of some of typical low blood sugar incidents that I experienced. I guess they could see that I effectively addressed those incidents. In any case, I would have loved to had them as an ally instead of rival of sorts.
I maintained normal glycemia throughout my hospital and in-patient therapy time, about 10 days. I do remember adjusting my BG targets upward some to compensate for the reality of the situation. Instead of shooting for an 83 mg/dL, I bumped my target up to 95-100. I don’t think I ever went over 140.
While this may seem overly aggressive and unreasonable to some here, please keep in mind that I’d spent years before my hospitalization managing my time in range around 90% 65-120 with less than 1% below 54 and glucose variability around 20 mg/dL SD.
Jim, I share your values of trying to maintain normal blood glucose while in the hospital and your experience confirms my worst suspicions about hospital treatment. I hope that I never go back in the hospital again but fear that that is an unreasonable expectation.
I can only imagine the horror of that situation. I can imagine that the originators of this glycemia policy think that a few hours/days/weeks of high BGs is no big deal but I find it hard for them to defend catching a hospital super-bug and that infection evolving into a hyperglycemia that could be untreatable.
I appreciate the wisdom of several comments about proactively managing an expected hospitalization in advance but that is not always possible. That is why we should all have contingency plans for the unexpected.
One thing that you do control is what you eat, how much you eat and when. If they refuse to give you reasonable amounts of insulin, you could refuse to eat the food that matches the missing insulin. I know that seems childish but withholding insulin from an insulin-dependent diabetic seems childish to me. Being comfortable with regular fasting is an asset at times.
And be aware of glucose in IV drip!!!
I haven’t had to be hospitalized yet. For planned operations I absolutely would require a meeting with the surgeon and anesthesiologist to discuss diabetes management and bring a letter from my endo with a plan. For unplanned visits I know I have to say to every new person that walks in to do something to me “Hi I’m a Type 1 diabetic and I am 100% dependent on insulin.”
Thanks @Terry4 for posting the link to the podcast. I check out the TYOCD content regularly and find what they describe matches my experiences. I do wish they approached this topic assuming the hospital does not have a group who is good at managing diabetes. UCSD helthcare is attached to a top 10-ish medical school. There is a huge and smart amount of review going on catching the small errors that happen at most other hospitals.
While I’ll plan to wear my CGM in the hospital I absolutely do not expect a nurse to understand the the CGM’s estimated blood glucose reading, the dozens of reasons why it may be off and understanding the slope of the line. Chances are the nurses are over worked, under paid, just had to clean something foul off the patent next door.
I’ve also heard the TCOYD docs talk about, that as Type 1’s themselves, sometimes there are days and blood sugars when they just have to say “ah bleep it”. Being in the hospital is absolutely a diabetes ah bleep it moment. Being a little over 200 for a day or two is not going to shorten my life. The flip side is, I don’t feel good when I’m over 200 and as the podcast mentioned people heal faster when in range so I will absolutely hit the care team with that if they aren’t trying to bring my BG down.
On top of the whole managing diabetes workload, hospital patients must deal with whatever illness or incapacity that put them in the hospital. And finally the patient needs to add one more layer of complexity over the top of these issue that, each by themselves, area already difficult to do well. And you probably don’t feel physically well!
Sussing out the interpersonal dynamics between you and the ever changing shifts of staff is definitely a challenge. I certainly felt that I knew more about diabetes and insulin than any of the staff that I interacted with. It became obvious that some staff did not perceive or respect an informed patient well.
When they posed observations that were ignorant or just plain wrong you have to muster every ounce of diplomatic energy you could. Reminding yourself to be humble and extending a benefit of doubt to each interaction was yet another straw loaded onto an already full load.
I had to constantly remind myself that all the nurses, docs, and other healthcare personnel are all just ordinary people trying to do a hard job! Yet, it’s the patient’s health and welfare that hangs in the balance. Just thinking about it causes a flurry of emotion.
Well short term denying insulin, results in this type 1 being seriously angry and demanding that either they give him insulin or he will check himself out drugs or no drugs on board. Damn I was angry.
As I look back on it, I will not do that again. I mean I met with them pre-admit etc. He nodded in knowing appreciation that i was telling him these important things and then he decided, no insulin.
Did I mention I was angry?