Hospital Care

Community
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I am sorry if this sounds like a complaint session but I wanted to make the community aware to hopefully prevent the horrible hospital care I received in early January 2025. This is not an advertisement for the product mentioned below, just a heads-up for others.

I was found unresponsive in my apartment after being a no-call no-show at work for two days. A friend of mine has a key to my place and was the one to call the EMTs. I was in DKA and had a very high BG.

I have been wearing a MedicAlert medicalert.org necklace or bracelet since my first diagnosis in 1982 at the age of two. I was always under the impression that the engraving on the necklace gives emergency personnel the highlights of your medical conditions for immediate care. Once you get to the hospital the CALL 800-xxx-xxxx and your member ID they will get additional information like providers, medications, and a ton of other data points you can provide to the service.

Even once I came to in the hospital, I wasn’t 100% clear-minded and was arguing about medications for treatment with the doctors and hospital staff. It did not occur to me to say “Call MedicAlert” as I thought this was standard operating procedure. Turns out when I contacted MedicAlert no one called on my behalf. The hospital I went to treated me based on the engraving and step-one medications but never called MedicAlert.

If you have a MedicAlert ID, or other branded ID that has a call for an additional information system like MedicAlert, I would highly recommend that you tell all of your loved ones, family, friends, and co-workers that if they find you unresponsive to tell the paramedics and emergency department to “CALL MEDICALERT”

MedicAlert has been introducing QR Code ID’s now that give the medical providers the ability to scan the code and open your entire record without a call to MedicAlert. I was waiting for one specific necklace design that came out the same week I was in the hospital! Given the experience above I have switched to only QR Code ID’s to maybe force them to call or scan instead of making treatment options based on what was engraved.

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Wow, very glad this turned out OK for you.

Your post brings up lots of questions for me, in particular what was the series of events that led to your being found in DKA. You could spend several interesting pages on that and I really hope you will, either in this post or a new one. Then also, of course, why you found hospital care to be horrible.

But first, I do appreciate the reminder about emergency contact info (I just checked and updated mine on my phone). Like you, I used to have a medic alert necklace with engraved info, but I found the engraved info to be woefully out of date and incorrect as time passed (doctors, insulin types, etc).

Rather than continually updating it, I switched to wearing a simple necklace stating “Diabetes”, then adding a couple ICE (In Case of Emergency) entries to my cell phone. One to contact my wife and another for my endo. I leave my cell phone unlocked since I never install any payment app or do any online banking.

I know myself well enough to know that I would not keep info at a third party database up to date, whether medic alert or any other site. For me, relying on the contacts in my ICE cell entries seems more pragmatic.

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I don’t know what led up to my DKA. I was not feeling well in December and had traveled that previous weekend. I do have a history of non-diabetic seizures, and that was on the old MedicAlert necklace I had. However, I feel that the hospital saw DKA and said that’s it and treat. I don’t feel they did any brain scans to see if there was any post-seizure activity. I have already scheduled an appointment with my neuro to look at the hospital records.

I still feel the MedicAlert is the way to go. I just abandoned the engraved version from this experience. With their QR code, you still need to update the information but it is updated instantly and will then display that updated info when the code is scanned.

My post was mostly a rant on why the ED didn’t do it and my disbelief that the hospital didn’t know what is available with these services if they are used. It would have saved them so much time and guessing. I doubt it would have helped with the insulin as they do not stock and refuse to give Tresiba for long-acting insulin and sounds like Regular insulin is the only short they offer. While Humalog/Novolog are only 10 years newer than Regular they are so superior in every way it is appalling. I was arguing with them on the anti-seizure med as well, but couldn’t remember the medication’s name. Again a call to MedicAlert or scanning the QR code I now have would have eliminated all these problems. Incompetence at its best!

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This begs many questions for me, but tell me if this is too intrusive or makes you uncomfortable. That is the last thing I want to do. I’m just trying to see if your experience would apply to me or others.

What is the last thing you remember before going missing? Do you remember missing insulin shots or your BG going up significantly? Were you trying to bring BG down, or was high BG unexpected when you came to? Were you conscious in your room, or out the whole time? How long were you out (if you were)? Have you had instances of DKA before other than at diagnosis?

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I don’t remember much. I remember dropping the kids off at the pool and going to the bathroom often. I remember the telephone ringing and not answering it.

This was more of a PSA for those who do choose to wear a MedicAlert or similar medical ID that has a number to call for additional information. Having all of your friends, family, and coworkers to know to tell the emergency personnel, emergency department, and ICU personnel to call the service.

I am single and live alone and have for 40+ years thought the various emergency personnel would just call the service. To find out that they didn’t and the “quality control director” didn’t know what was available from that call just blows my mind away.

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Your experience with emergency medical personnel’s inattention to medical alert info is consistent with my overall perception of hospital care regarding diabetes. I haven’t worn a medical alert bracelet in a long time. Ideally, a strong personal advocate works best but only fate will determine if that is effective.

I too live alone and worry about this issue. I am troubled by the general ignorance of practitioners who are confused, for example, by the distinction between T1Ds and T2Ds. When I was hospitalized in 2022 with a stroke, I was lucky to be cognitively and physically well enough to advocate for myself.

Once I demonstrated my diabetes treatment capability, they took largely a secondary role. I wish they were more supportive of me in my insulin dosing decisions and offered some support in changing my infusion sets and CGM sensor sites. Their attitude was, “either you’re in charge or we’re in charge, no blurring of that role.” That legalistic view of things was apparent and discomforting to me.

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That is scary, and I understand your concern. I wonder whether emergency responders would be more likely to scan a QR code than they would be to call an 800 number? Personally I would be hesitant to get a QR code emblem since that doesn’t include in writing the basic info (diabetes) I most want them to know.

I found this website useful. Based on that, I will add a simple piece of paper with “Diabetes, insulin using Type 1” to my wallet, a redundant source of info along with “diabetes” necklace and cell ICE entries.
https://www.verywellhealth.com/where-should-i-leave-medical-information-1298503

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I don’t know, I think their decision was the best one. Having more than one person trying to manage control at the same time seems a recipe for frustration, confusion, and disaster. You clearly had strong opinions about your dosing decisions, so I don’t think they had much choice.

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Jag,
If they are making wrong and incorrect treatment decisions based on an engraved text ID, then I would rather them not know anything if they are unwilling to call or scan the QR code. They will not get any further with the patients’ care than without the ID.

I also disagree with the multiple people managing care while in the hospital. If I had a seizure at the same time they would usually bring in a neuro to consult with the hospitalist. Who better to manage your T1D than you? T1D is one of the most unusual diseases we have as its treatment is very personalized, taken care of by the patient, changes from week to week, and requires constant monitoring and tweaking. None of this is done by the healthcare providers but by the patient.

Medical providers will see T1Ds’ but as we are such a small percentage of the population they will not have a lot of interactions with, and thus unaware of what works best for us. You go in with a heart attack or stroke and they know what to do.

I will quite possibly be going to the various medical centers around my apartment and dropping into the ED unannounced and speak with whoever I can speak with. It is incompetent to not use all of the resources that are available to you. They should love to have meds and providers numbers to call.

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I don’t believe your responding medics of EMTs do this. They don’t make phone calls in an emergency. One keeps you breathing and one drives. Their goal is to get you to the hospital ASAP because that’s where they have the tools to save u. They will not delay transport to the hospital in order to make a phone call. They will make a phone call to the hospital to prepare that staff for a critical patient who is arriving shortly. That’s it.

I can’t say if the hospital staff will scan a QR code either. I don’t know. It not impossible, but it’s also not likely.

I am an epileptic diabetic in my 40s. This is tricky. I have traditional med tags that have my name, followed by,

Diabetic Type 1
Epilepsy

That’s about all you can fit on a med tag, but I figure it’s about all they need in an emergency.

If you are worried about that not being enough information, sometimes people tape a page of records to their front door so the medics see it when they leave.

The information that your medics want and will use is the following (from an unconscious person):

Name
Date of birth
Allergies
Medications
Previous (pertinent) medical history (for example, history of non-hypoglycemic seizures, diabetes)
Emergency contact person

For the ER, their primary concern in DKA is not what type of insulin you are on. Your blood has turned into a strange soup that is not gonna keep you alive for long - the chemistry of your blood is all messed up in ways that can stop your heart. They fix the chemistry of your blood by giving IV potassium so that your heart keeps beating.

I bet this experience was total ■■■■. I’m glad you are OK. I sometimes can’t tell the difference between seizure events and low BG events, even in hindsight. You are going to be a challenging patient for your medics, so I would feel better if you gave them whatever information might help them in an emergency with no technical restrictions on that data. If they have to jump thru hoops, they won’t obtain the data. I think that the quality of your care will be better if they have info. Otherwise, its a total guessing game.

Your EMTs will feel for med tags around your neck and if you have engraved information there, they will read it. That is protocol. Know that sometimes they forget, but the hospital will find the tags. I would encourage you to make that information as easy as possible for them to access - not put it inside an app. There’s no protocol for apps. There’s no protocol that requires them to have internet access.

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If I am found unresponsive then I want emergency responders to know that I have diabetes because that is the most likely cause, either high or low BG. In your case, you have two conditions, diabetes and seizure disorder, and presumably the paramedics checked your BG and other signs and correctly concluded your BG was the root cause. The details, of medications and amounts, doctors and tests, are important to know when in a hospital, and I agree 800 or QR should be checked then.

Unfortunately it seems possible to me that many people will have stale data in their databases, so contacting medical care worker keeping our history is always going to be preferable.

Sorry, I think you misunderstood my response. I said I agreed with the response of the hospital to hand FULL control of BG management over to the patient, while the hospital took responsibility for managing his stroke. You seem to be saying exactly the same thing I am saying, which is what the hospital did.

What Terry was suggesting was that the hospital should share responsibility for managing his diabetes care, but how does that make sense when they have very different standard of care and BG level? He was not comfortable running his BG at the higher level the hospital uses for patient safety, so they allowed him to have complete control over maintaining his BG. Isn’t that what they should do?

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Not all ER departments will do this. Not all ER departments will do this for every patient in every circumstance. The harsh truth is that he and I, as people prone to seizure, may not always get to do this. If he came in unconscious in DKA, it’s very unlikely that he will have any input on insulin dosing. If he arrived at the ER conscious, carrying all his diabetic supplies, then I think there’s some room to negotiate. That’s just the harsh reality of the situation. We can discuss it more if that is important, but there are a lot of important issues embedded in this post. So, let me know if there is something specific that should be addressed. I’ll try to help if I can. This whole situation sucks.

Where do paramedics look for information? Engraved med tags (like army dog tags) are the place. https://www.verywellhealth.com/where-should-i-leave-medical-information-1298503\

You can try the front door card (but there’s no guarantee they see it). You can buy them here: Amazon.com: Red Medical Condition and Emergency Contact ID Wallet Card Folding, Medical Alert Card (5 Pack) : Health & Household

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I like having one of these in the drivers side windshield of my car during long distance travel.

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You and I were posting at the same time, so I was not responding to your post. I was responding to Jonathon, by quoting his response and writing my reply.

It was Terry, not me or Jonathon, who was complaining that the hospital gave him FULL responsibility for managing his BG while he was in the hospital (NOT the ER).

I will say it again to try to make this clear. If one is unconscious in ER, then I absolutely rely on ER doctors to manage all my vital signs, including BG and anything else that caused me to be brought in. I hope to help them by giving pointers to my medical condition using Medalert, phone ICE, or wallet card. But I know I can’t rely on them to dig for extensive information in the critical time frame they are operating in.

Once in recovery and general population, then additional patient info should be sought. And the best case is for a hospital to give a patient the choice of either (1) letting the hospital manage their BG, or (2) allowing patient if competent to take over FULL control of their insulin and BG. Is this controversial?

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They may or may not do this. Sometimes they do, but often they don’t. It really depends on the situation and who is working. That’s just the harsh reality. I’m just responding to the end of the conversation, not to anyone specifically. Sorry for any confusion. Let’s see if the OP has some direction that he specifically wants to take this discussion into areas of concern. This is a complicated post.

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Granted, they may or may not do that. And if they don’t allow me to manage my own BG, then THAT is worth complaining about. In fact I probably would complain about that if I felt their management was substandard.

But complaining that I was given the choice and allowed to have FULL control over managing my insulin and BG while stuck in the hospital? That is what Terry said and what I disagree with (for the fourth time).

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@Jonathan14 oof, that sucks, hope you survived with no permanent damage. Have you gotten past that terrible DKA feeling and anything related to seizures or are you still recovering?

I wanted to offer a different perspective. Medicalert and the lookalikes are great if they are used but they don’t have to be used. And from an IT guy perspective, just make sure there is something human readable to go with the QR code.

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I guess my initial response to this issue did not clearly make my point. After spending one week under professional medical care post-stroke I gained some new insight to what I think would be most effective diabetes care for me. I learned that there is a “middle ground” that could work.

That middle ground is one of collaboration that could meet the needs of both the patient and the providers with little, if any, sacrifice from either. In my mind it is a model where the providers and patient act as a team and diabetes is the common adversary.

How could this look? The patient could request some provider help with changing an insulin pump infusion set, for instance. Having an extra set of eyes as well as a set of unimpaired dextrous hands could insure a good outcome. This model utilizes the best that both the provider and patient can offer. It recognizes that the patient with long experience can cognitively/physically stay engaged while s/he collaborates with a provider who can make sure that things are done right.

What I’m proposing is a respectful alternative to the current situation where patient or provider makes all the decisions and executes all the required actions. Responsibility and decision making are instead shared. I realize, of course, that this idea only works with patients who have enough cognitive and physical capabilities to offer and that the provider is willing to extend this agency to the patient.

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I’m just gonna throw some stuff at ya’, @Jonathan14. I recognize you. I’ve seen you around the forum in the past.

They can probably still do an outpatient EEG and detect unusual brain activity. That would be a clue that this episode of DKA may have been triggered by a large grand mal that led to a period of unconsciousness, that led to DKA.

Was this DKA triggered by a seizure?
Some clues I would dig around myself for are, “Did I have any seizures in the days/weeks leading up to the event?” Seizures tend to increase in frequency in the time period leading up to a large seizure event. Of course, in the time period following a large seizure, you might not have much memory at all. So, that can be a dead end.

If it was a straight, run of the mill episode of DKA, then I would be looking at my sensor data.

FACT: Adults who have more than one or two seizures in their lifetime, for which a cause cannot be identified, have epilepsy. That’s the definition of epilepsy.

FACT: If you are an epileptic diabetic, I would feel a lot better if you ran a Dexcom. It would be super helpful in circumstances like this.

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“It’s complicated”. But I’m all for having someone at least aware of brain problems being in on DKA recovery. A couple days of no insulin and DKA, followed by a rapid reduction in bg, can lead to cerebral edema.

One advantage of Tresiba over pumps is that the long long tail of Tresiba means some insulin (although not nearly enough) is still active even a couple days later.

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I hope he is OK. It worries me that we haven’t heard from the OP. Maybe still just recovering and catching up with day to day business things. :grimacing:

If it was a big Grand Mal, it can be followed by more, smaller seizures for a period of time. Not cool. No fun. Makes my problems dealing with insurers today look like a walk in an enjoyable park.

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