Institutional ignorance can kill us

Diabetes Advocacy Self Advocacy
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One of my biggest fears is ending up in a hospital or nursing home unable to advocate for myself, experiencing persistent hyperglycemia, and overtaken by DKA or a lethal infection. I’d like to think that hospitals and nursing homes are populated with professionals who understand diabetes because of its pervasive prevalence.

Nothing could be further from the truth. There is a sprinkling of health care professionals who do understand diabetes and are capable of effective, though not likely optimal, glucose management. On the whole, based on many anecdotal accounts gleaned from forums like this one, the sad truth is that our hospitals and nursing homes can produce the worst of glucose management practices and their institutional culture sustains that ignorance.

The typical doctor, nurse, or dietitian is often primarily motivated to avoid a severe hypoglycemic incident on their watch. Their main tactic is to run the patient’s blood glucose well north of 150 mg/dL. That is an effective tactic for avoiding hypoglycemia. But it’s simply a tradeoff for persistent hyperglycemia that comes with a whole host of other dangers.

Stacey Simms’ Diabetes Connections February 8, 2022 podcast was an interview of T1D Molly Schreiber. This podcast was primarily about Molly receiving a rheumatoid arthritis diagnosis on top of her T1D status.

A sidebar to her story featured her T1D father and his experience showcased my most vulnerable fear. Fast forward to about the 32-minute mark on the link below to hear Molly describe what happened to her father.

He suffered a blow to the head at home from a severe hypoglycemia incident. That put him in a nursing home for recovery and rehab. The nursing home staff refused to give him any insulin. He repeatedly requested insulin and they just didn’t deliver. Maybe their experience of the overwhelming population of T2Ds taught them that withholding or delaying insulin is not critical.

All the details of his case were not given but, bottom line, he fell into DKA and died. This man was five years older than me. Yeah, that got my attention.

Something needs to change! There’s a huge swath of ignorance in the hospital and nursing home institutions and the worst thing is that these institutions are unaware of their ignorance. This is a dangerous recipe sure to kill more of us. What can we do?

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That’s criminal! :flushed: :rage:

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We don’t obviously know all the details here, @SophieCat. But we do know that an elderly man died of DKA in a nursing home following his repeated attempts to get some insulin into him. His daughter also claimed that he desperately called an ambulance to get some insulin.

I think, if faced with the same situation and could muster my wits, I would stop eating until insulin arrived. But the basal need for insulin would still be present.

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This is a horrible story. It tells me to always live in the same town or city as a family member. First of all, my husband or son would have taken me home from the hospital and would have not had to put me in a facility to recover. If I did end up in a hospital that did not understand my insulin needs, my loved ones would tell them in person in no uncertain terms to listen to me and give me the insulin I needed. It might be harder since covid, but they would still make themselves heard.

Also I would call my doctor and tell him I wasn’t getting my insulin and he would promptly call the institution and make sure that the problem was remedied.

I do worry that my husband and I could be in an accident while traveling, and then I might not have a spokesperson who could look out for me. I do keep a list of my insulin requirements in my wallet so hopefully those would be followed.

Some of us have strict diets that need to be followed and that could be a big problem. If I ate much fat my insulin resistance would increase. I have never been in the hospital for my diabetes since I was dx in 1959, but I have been in for other reasons, and so far I have had no problem having my food and insulin needs met.

I worry more about eventually losing my cognitive skills and not being able to continue figuring out my insulin needs, but by then maybe it wouldn’t matter as much.

I feel very sad for that man who was probably dx about the same year I was. He tried so hard throughout his life only to be killed by someone else’s incompetence. I imagine the nursing home staff was scared to give him insulin, since too much insulin is what caused him to fall and hit his head in the first place.

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Marilyn, it’s good that you have thought of the many contingencies that living with diabetes entails. I wondered about this man’s immediate family and why they weren’t directly involved. I’m sure they were all sick with grief and guilt when they realized just what happened.

We all need personal health care advocates, even for more routine hospitalizations. In our case, these advocates need a certain level of knowledge and assertiveness when dealing with the “experts.” Those of us who live with diabetes every day for decades realize just how much doctors and nurses don’t know. But once we’re incapacitated, we must depend on whoever is able to speak for us.

Family members are natural advocates but may lack the knowledge and assertiveness to advocate effectively. I wish there was a professional class of health advocates that could step in any day and in any hospital.

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Thanks for sharing this, Terry.

The story of Molly’s father in a nursing home reminds me of a few of the stories I’ve seen here on TuDiabetes about folks in jail being denied their right to insulin. A quick search brought up this post and this post.

I agree that this is very frightening. People with mental health needs, people with justice system involvement, and the elderly all rely on institutions to keep them safe. As Terry’s title so accurately states: institutional ignorance can kill us. If these institutions do not understand our medical needs, they shouldn’t be permitted to take us into their complete care.

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Mike, thanks for stopping by. Yes, the justice system is another institution that could kill us with their ignorance of diabetes. I suspect that they would take away an insulin pump from a diabetic as standard practice. But I would hope that some sanity would prevail regarding the health significance of doing that.

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I’m so tired I cant take time to read the replies but…
currently my 96 yr old Celiac Mom is in a rehab facility. They do not follow gluten free diets with any kind of skill. I had to teach the head cook some things, and he tries really hard but when he isn’t around, the servers slap wheat and all sorts of things on her platter. The manager told me they do not do anything related to diabetes diets, or gluten free or low sodium. I also spoke to a residential home manager today (alternative to assisted living facility.). Those places run in the thousands if you choose to live there. And she told me, the families responsibility is to provide every single gluten free meal. Um, right. While I don’t consider a diabetes diet a necessity, because we don’t all look at it that way, I do know that this place would be slapping down sugary desserts on anyone’s tray, and not really giving it a second thought. Mom recently had to eat low sodium, and she would have been out of luck with that too.

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Yeah, I realize that these institutions are not singling out diabetics for ignorant treatment. Celiac disease and diabetes are just two of a long list of health conditions that institutions treat poorly.

I feel for you and your mom. Celiac disease is a major health challenge since the sensitivity to gluten is extreme and the health consequences of cross-contamination real.

I certainly would not want to eat the dreck that institutions serve. If I planned any time in one I would have to tell them that I’m “allergic” to wheat, corn, rice, soybeans, all other grains, potatoes, sugar, milk, most dairy, all below ground vegetables and artificial sweeteners. Sounds like I would be given the same “supply your own food” ultimatum.

This is a sorry state of affairs. Laura, I wish you the best of luck looking out for your mom!

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Here is another reference.

“His nursing home didn’t get his insulin from the hospital when he was transferred there. They had him wait a day to get it.”

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Thanks, @MM1, for posting this story. Looks like I totally missed this back in November 2016. I wasn’t aware that this man’s glucose control was so good. And that he was only without insulin for 24 hours.

Has the medical profession learned anything from cases like this or does the inertia of the status quo still dominate their culture?

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I share your concern. I listen to the ADA’s Podcast for practicing medical staff.
https://diabetesjournals.org/journals/pages/diabetes-core-update-podcasts

They have many times talked about hospital care being poor. The way they explained it.

Insurance companies consider going low a NEVER SHOULD HAPPEN EVENT. Because of that they won’t pain any associated cost for patient care for hypoglycemia. Nurses don’t have time to check/manage blood sugar often. They check sugar once every 4 hours and adjust insulin on that interval. Hospitals target blood sugars above 150-200.

Constant blood sugars in that range slows healing and increases the chances of infection.

The ADA has advocated that patients capable of self insulin administration be allowed to do so while in hospital. Some hospitals will allow this but many will not.

I hope I’m not in this situation but if I’m in the hospital and conscious I will NOT allow them to manage my blood sugar. I will do it or they will need to transfer me somewhere that will allow me to manage it.

I don’t think anyone but your self if capable of managing your blood glucose well.

Just imagine the average ER doctor putting you on an insulin drip not nothing your insulin to carb ratios, checking your sugar every 4 hours.

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Aside from medical professionals being stretched way too thin to provide sufficient monitoring and treatment of insulin-dependent diabetics, the payers don’t help us either. I’ve heard that Medicare also administers these kind of penalties.

They install economic penalties for hypos and remain quiet about hypers. That is an unrealistic and short-sighted policy. The response of the typical health care professional is rational but threatens patients just the same.

When will patients be allowed to participate in these decisions?

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Unfortunately for a condition like Type 1 diabetes most nursing homes are not equipped to handle. They can handle giving pills and getting patients in an out of bed, but more than that will be problematic. We can all pray we don’t end up there.

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If I had my way, every admitted inpatient with Type 1 DM would be on a CGM at minimum. Similar to telemetry for cardiac care.
Of course the immediate risk of untreated hypos leads stretched hospital staff to target higher, even where that impairs survival overall.

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My biggest fear about going into a hospital is that they will try to force me to shut off my pump, and they will want my bg’s to run too high.

When I had knee replacement surgery a few years back, I was lucky in that there’s a great orthopedic surgeon at my local hospital, and my pcp went in there as soon as I was moved to a room and wrote in my chart that I was to manage my own testing and insulin. The nurses were all surprised, but they didn’t interfere. Unfortunately, the hospital was flooded out two years ago, and while they are going to rebuild, it’s been closed and will be for another two years, at least.

So, when I got sick last fall, I ended up in a hospital where my pcp didn’t have privileges…luckily, they didn’t notice in the ER that I had a pump, so I didn’t have a problem with that. And, when I got up to a room, the nurse was surprised that I still had my pump on because, according to her, they usually ask you to remove it in the ER. My response was “over my dead body are they removing my pump!”

Unfortunately the hospitalist was a total jerk and kept insisting I had gastroparesis (with absolutely NO evidence). Talk about a little knowledge being a dangerous thing! Turned out I had gastroenteritis.

It’s really scary how little medical personnel who are not endos know, and even scarier when those who really don’t know have pre-set assumptions that are dangerous. As long as I’m awake and able to communicate, it’s okay, but scares the hell out of me that I may end up unconscious in a hospital and they rip out my pump before I even know it.

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I did the same for a major surgery in 2013.
I had insisted on iv insulin, and learned surgeon and anesthesiologist play key roles in this decision.
After surgery i remained on iv insulin, and nurses had to check my BG and adjust every hour. Also getting IV glucose and pain meds so i was sleeping through most of that time. Was lucky to have a neighbor who was at that hospital, although not caring for me. But she was willing to help me insert Dexcom once i was awake. Turned out they did a pretty good job!!
Then i was moved to regular care room, and was able to do my own care, with letter from endo. I’m ok with the higher bg goal they used, they saved my life!!

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There is interest in going in that direction, as learned with covid.
However, nursing homes is a different situation.

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I asked my 33 yr old son what he would do if I was ever in the nursing home situation and he said that he would get himself to the nursing home immediately and demand that they do what I said to do to take care of my diabetes. He said that if they refused that he would take me home and call a lawyer.

I figured that is what he would say, but it was good to hear him and his wife say it. I know that is what my husband would do.

I also suggested that all of us get together and I will tell them more about what my insulin needs would be in that situation. Now I need to get this all on paper so they can have that info and so I can have it when we travel.

I also made an appointment to talk to my GP about this. I need to find out if he can inform the hospital that I will be in charge of insulin decisions.
I have also learned to keep some extra insulin in my purse and to take my testing materials with me if for some odd reason they take my CGM.

If I have to have surgery for some unknown reason I will talk with the surgeon about my insulin needs while respecting his or her needs. I don’t mind running a bit higher for the length of time I am in surgery if the surgeon and anesthesiologist feel it is necessary. I will not want to be higher than 150 though. So far for colonoscopies etc we have all agreed to keep me at a very reasonable level.

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It is scary to have to think about these things - I don’t have any kids and I know my husband will advocate for me, but what happens if I am hospitalized and can’t stand up for myself and he’s not there? This is one of the many scary things about aging with diabetes. FWIW, I’m only 34 but have been dealing with this since I was 8 - so who knows what technology will be like in the future, but I could get hit by a car tomorrow.