Recently while seaking help in an emergency room, I had all of my diabetic supplies (insulin, testing supplies, food) taken away from me. I protested that I needed them, was told no and was instructed to put them in a bag which was taken away from me. I have a CGM and the only way I could keep it was by sneaking it past them. While I waited in a locked room, I had no access to my supplies for 6 hours. I went quite low for several hours (50’s) and wasn’t able to treat my condition. During this time, I was very stressed and had difficulty with feeling weak. Even though the nurses heard the monitor go off repeatedly, they did nothing to assist me. Do you think this was a violation under the ADA?
I am SO sorry that happened to you. I’ve had similar experiences where they tried to make me take my pump off and dose me through an IV, etc. and I fought tooth and nail because I knew they wouldn’t know what they’re doing. I never looked into the legal background of this, but there has to be some sort of malpractice/negligence thing there.
Ohhhhhhhhhhhh Karen @karenchq, I can feel your frustration and shudder at the thought of the trauma you experienced.
It is possible from what you report that an ADA violation occurred but it may be more than that. Consult first with your doctor and get her/his opinion and, if the doctor feels you were harmed, present your case to the District Attorney for investigation and possible prosecution. I do hope that you were not seriously harmed.
@karenchq first and most - your story is a scary one and I am sorry that happened to you.
I have no idea the circumstances of why you were in an ER but I can tell you this, unless I was going to die, the people in the ER work for me, not the other way around. Nothing is stopping me, absolutely nothing, from getting up and leaving (or go to another ER). I can’t tell from what you describe if these people were acting in a necessary way, or if they were not nice, or if this was kidnapping (maybe unlawful imprisonment?) and I suppose it all comes down to what you were asking them.
I have only had a few surgeries and 1x time in an ER. At the ER, the very first conversation was with the duty physician that I was in charge of blood sugar (testing and insulin, and pump and supplies) and they were in charge of everything else. Once accepted, this is written in your chart and then it becomes the “deal” for everyone in the ER. Same deal for when I needed surgery, although I had to negotiate a reduced basal because he was afraid i’d go low under anesthesia.
hope this was the first and last and that you are ok and feeling better.
@karenchq, I hope things are going better. One resource you might want to contact for help is the American Diabetes Association. They have experience in this area - you can find information on this at http://www.diabetes.org/living-with-diabetes/know-your-rights/discrimination/
Your statement, “…While I waited in a locked room…” raises an issue. ER rooms are seldom locked unless the staff is concerned about a person’s safety. If they have such a concern, it is prudent for staff to remove everything from the room that might be used by non-hospital staff to harm the person (either the person harming self, or another person entering the room and harming the person). Insulin can produce psychoactive effects, food can be “laced” with psychoactive chemicals, and testing supplies often include “sharps.” So, in the ERs and psychiatric units where I have worked if we were concerned for a person’s safety we removed “everything but the mattress” (so to speak). Heck, shoestrings pose a real danger on a psychiatric unit; that’s often why patients’ shoes are taken away and they are made to wear socks with no-slip treads on them.
On the other hand, some ERs are staffed by people who know little-to-nothing about T1D. In that case, you may have been at great risk simply because of their ignorance. What you experienced was likely due to the reason for your admission to the ER and/or the competence of the staff.
You are welcome to give us as much detail as you are comfortable providing (don’t put your privacy at risk). That might help forum members better appreciate how ADA might apply to your experience.
Glad you made it through it all. And best of luck to you!
Thanks for all the responses and well wishes. It helps me to get it out and have understanding people to chat with.
It’s actually a HIPAA violation.
Hi Karen. I’m my 30 years of T1D, I’ve had three hospitalizations - the second, nine years ago, was similar to your experience. The third, a year ago, was totally opposite. I was allowed to keep all my equipment and treat accordingly to fingersticks - I have a cgm too. The fingersticks were for their assurance — I have a note from my Endo stating if hospitalized, I am to continue self-managing. As others have said, you have to advocate for your self-management or have someone in your corner to advocate for you if needed.
Karen, I have had a similar experience just recently (Feb) so when back in hospital last week I was very careful to say nothing about what I brought with me. My experience in Feb included, incorrect insulins and dosages, non-diabetic foods and a host of other issues. This time after leaving recovery I was only responsive to questions about how I felt. Once into a hospital room I took care of myself and even had to lie to some of the practical nurses trying to take my BS, give me insulin doses and food. It went OK last week but I was only in hospital for 3 days. After the Feb incident I wrote to the independent quality assurance company that deals with the hospital and got seversl responses back. Most hospitals and emergency wards DO NOT know how to manage treatment for T1D’s. It is so sad.
Speaking as a nurse and t1d for 30 years, I do know that when you are in the hospital all medications must have orders and be administered by a nurse. That being said, it is possible for a physician to write an order for insulin to be delivered by pump, although I doubt that many ER doctors are aware of how to properly write that order. I have not been hospitalized since starting pump therapy, but I have had doctors take me off of my Lantus and Humalog sliding scale with meal blouses because writing the order was too complicated and the staff would be the ones required to count my carbs and administer bolus. Those instances I had to go back to the ancient R and NPH. I would suggest asking for an Endocrinologist consult if ever in this situation to get the orders properly written. There are so many situations that used to frustrate me before I became a nurse that I now understand are do to medical regulations. My biggest issue used to be that I wouldn’t be given insulin until after I had eaten, but I now understand that the hospital could be held liable if they gave me insulin then I suffered from hypoglycemia because I refused to eat.
so yesterday morning I woke up and was violently ill, plus dizzy - heck it seemed like I was on a roller-coaster I could not stand up, felt like my house was off it’s foundation. 4 hours of stomach cramps and no sign of letting up so I went to the ER.
after the regular admitting BS and the ID and insurance - I was in a patient room, mine had a curtain. A nurse came in with the gown and when I complained I was cold, she found hot blankets. Then the tech came in and hooked me up to the BP and blood oxygen/heart rate monitor… “so how are you feeling”? he asked “super great” I laughed. Then the ER doctor came in. I told her I was t1, had a pump, and would be in charge of insulin, testing and corrections and she agreed. done. no fuss or muss. they did want a BS on their own machine so I allowed it.
turns out I am fine, very bad stomach virus and dehydration, came on so fast though. They were concerned with DKA but I knew it wasn’t the problem and I am sure a $3,000 test confirmed it… 2 full IV bags of water and I was good to go. so I guess it really does matter where you are and probably a little bit about how you advocate for yourself… oh and also never comment on an ER post unless you feel like “tempting fate”. jk but who woulda guessed?
Welcome back to “the land of the living”, @Joe. So sorry to hear of your misery.
I too have found that care I’ve had in ER has always been top notch; OK, on two of my visits our daughter accompanied me and everyone there knew and respected her - she works ER at a related hospital.
It is part of my record at the hospital of my choice that I will be “in charge of” my diabetes management unless I request assistance - a standing order from one of my physicians.
I was in the hospital for 5 days in April. I needed to argue on a daily basis the amount of insulin I was to receive. I explained numerous times the sliding scale I am on but this was a continual battle.
I even met with patient advocate and director of nursing which helped somewhat. Thank fully I was released before any serious issues arose.
thank you @Dennis Dennis!
I am so sorry that this happened to you, I’ve been to ER a few times and I let it be KNOWN that unless I am in a coma, that I am responsible for my insulin, includes Pump and Cgm. Only once did someone try to take them. I take my own insulin with me or I have it brought to the hospital later… It may be a violation don’t know, but you nee3d to file a complaint with the Hospital Administrator, they may not do anything but if you do keep a copy if you need it later, name names if you have them. The last time I was in I ended up teaching some of the nursing staff on Omni Pod usage… One of the doctors refused to let me have my blood thinner med, and my husband cornered him and the problem was settled (husband was going to go after his license.) anyway what I am trying to say is that you have to show your strength and conviction, you know more about our Diabetes that they do. PS: Your reg. doc. may help you file a complaint. hope this helps jan
Thank you to all thise that replied. The moral support and suggestions are greatly appreciated. Here is a follow up to the story. I did indeed file a complaint with the hospital. I was given a written letter of appology and they absorbed all charges for the ER visit.
Gaston hear that and that your ok! I had to have the endoscopy and the other end (colonoscopy)looked at, before I went in I told my Endo and was given verbal authorization to tell them that I would treat the diabetes. Including any other meds I am on.
I argued with four physicians, 3 nurses, a pharmacist and a few other. I told them no way anyone but me or my wife was treating me. My endos office is on the 4th floor of hospital and told them to call and talk to them first. I would in no way give them my insulin or test equipment. Trust me the tried. I held it in my hand the entire time they were arguing with me.
In the end I got what I wanted permission to self administer my insulin.
My case is different than most, I react differently than most people to all kinds of foods. Heck I can drink 8 oz of orange juice and not go up 30 points in a 5 hour period. If they tried to treat me, the sad truth is I’d probably be dead. I was on IV and I dropped 5 times into the 50’s and 60’s.
Next time I’ll get written authorization before I have to do anything. I’m thinking of writing a statement and getting Dr to sign it stating that as stated before unless I’m unconscious and can’t treat, that myself or my wife would be able to treat me until Dr can get there. Emergencies happen, car accidents etc. I think it might be smarter!
But glad your ok,
Not sure who might be checking back on this post, but I see a few glaring problems and/or areas that make for high tensions between the patient and the staff providing care.
First off, I hope you’re never in this kind of situation, it’s clearly not a good position for anybody, especially with T1D.
That said, here’s my take on things:
1: this is possibly a violation of rights protected by the Americans with Disabilities Act. But, as was pointed out above, that is also subject to the reason for the ER “visit” and the safety of both patient and staff.
2: it is definitely NOT a HIPPA violation, that has to do with secure storage, transmitting, and/or disclosing (release) of personally identifiable health information.
3: of a patient is not able to demonstrate safe use of their pump, due to altered mental status (due to shock, stupor/coma, sedated procedures like endoscopy, medication/drugs, etc) , or because of insufficient training, then they should be considered incapacitated, in which case it’s generally safer to remove the pump (though not necessarily a CGM) and revert to pen injections every 4 hours.
THIS IS PREFERABLE TO CROSSING YOUR FINGERS AND HOPING THAT THE NURSES WILL KNOW HOW TO USE THE PUMP, because they won’t. That’s why we remove them.
4: if you’re in the emergency room with DKA or hypoglycemic, the pump should come off, because, again, it’s generally safer to assume something is wrong with the device.
5: if you’re ever in this kind of unresolved conflict with your providers (nurses or doctors), ask to speak with the House Supervisor (basically the highest ranking nurse in the hospital, they can generally even get the doctors to flex).
In the end, please remember that the best prepared hospitals, as far as policies and preparedness go, are the ones who see more patients with pumps, or who have a good diabetes team to support their staff. If this isn’t your hospital, consider getting involved with their providers and help make changes.