Most everyone knows that landing yourself in the hospital with diabetes can mean trouble for your diabetes management. A recent study by the NHS showed that patients with type 1 diabetes are 3.5 times more likely to die from COVID-19, and people with type 2 diabetes are twice as likely to die from COVID-19 in the hospital as compared to people who don’t have diabetes.

Patients with diabetes have complained about the quality of care they receive in the hospital setting for a long time, and improvements are slow to reach the bedside. So, what gives? And how can you better advocate for yourself should you find yourself being admitted to the hospital any time soon?

Know Your Rights

Even though you’re in the hospital, you still have rights that doctors need to abide by. If you’re willing and able, some hospitals will let you sign a waiver allowing you to manage your insulin intake and test your own blood sugars while in-patient. If you’re on a continuous glucose monitor (CGM) and/or insulin pump, make sure you ask the nursing staff if you can stay on your technology for the duration of your stay.

Note: Staff will still come into your room and manually check your blood sugar with a hospital-grade meter every few hours, even if you have your CGM on. The more control you can have over your insulin intake and blood sugar management, the better.

John, who lives with type 1 and is from Iowa, says,

“About five years ago I had an overnight stay at the hospital for surgery, and the nurse told me that I had to remove my pump for the stay. I explained I would feel more comfortable with my own settings and control. She finally relented, but made me fill out a sheet every time I bolused or checked my blood sugar, and I was yelled at several times when I forgot to fill out the form… I was happy when her shift ended.”

Ginger, who lives with type 1 diabetes, recalls her experience in labor and delivery with her baby,

“They withheld insulin from me, and I had to take secret injections in the bathroom to keep my blood sugar at an even 90 mg/dL for the sake of my soon-to-be-born child.”

Managing in a New Setting

Managing diabetes in the hospital setting is extremely different from everyday life: your exercise and physical activity levels are way lower, you don’t have control over much of your diet, and things like infections and stress levels can leave your blood sugar sky-high. Keep in mind that you may need to increase basal rates or doses during this time, especially if you’re dealing with illness or infection on top of environmental change. Some ways to improve your management while in the hospital include:

• If able, walk laps around the floor to get some steps in
• Don’t request the “diabetic meal”- these meals are extremely high in carbohydrate, and are just fixed at a certain number of carbohydrates per meal. They are not low-carb. Instead, opt for ordering menu items “a la carte” where you can choose a few different protein options and low-starch vegetables as a side
• Increase your basal rates or doses accordingly (do not just continually bolus, as this can cause your blood glucose levels to crash)
• If you’re on an IV drip for hydration, make sure it is NOT a dextrose drip (this is the most common kind and will quickly send you into DKA)
• Make sure the hospital staff allows you to dose for meals before you eat! (due to liability issues, many will try and force patients to dose after they’ve eaten).
• Try mindful meditation or gentle chair yoga to calm the mind
• Remind  yourself that your stay is only temporary

Amy, who lives with type 1, expresses her frustration over the meal options that hospitals often provide for their patients,

“Although the doctors were wonderful, I found that they, unfortunately, do not get involved with a type 1 diabetic’s diet. So my first night there (before surgery) I was given a very high-carb meal. Pasta, bread, fruit, and dessert. The nutritionist told me that this was the ‘recommended diet’ since it was pre-carb counted.”

Allie from Brooklyn agreed that getting adequate care in the hospital setting was almost impossible,

“a hospital I was in once denied me insulin for a full 24 hours because they couldn’t get an endocrinologist on call to come consult…”

Advocate for Yourself

When all else fails, you must advocate for yourself. Being in a hospital can be lonely and scary, but if you’re well enough to advocate for better care, you must. Many hospitals and providers are not up to date on the latest diabetes technology and care, so arm yourself appropriately. Some helpful information to have on hand:

• Contact information for your endocrinologist and primary care physician
• A printed out diabetes medical management plan detailing how you manage your diabetes to provide to the hospital staff
• A printed list of all your prescriptions
• Contact information for your pharmacy and pharmacist
• An emergency contact’s information

Judy, a type 1 from Georgia, laments,

“…after the hospital began hydrating me (with a dextrose drip), I continued to get worse. They ended up not even putting me on an insulin drip, and removed by insulin pump so during that time I had no insulin on board whatsoever. Eventually, I was transferred to the ICU until an endocrinologist finally realized what was going on…”

Advocating and standing up for yourself can sometimes be the best guarantee that you will receive the treatment you need and deserve when in the hospital setting.

Diabetes is a multifaceted condition affecting major organs and entire body systems. It requires close, quality care and fine attention to detail. As diabetes can affect everyone differently, one must work with their healthcare team to create and follow a care plan based on one’s individual needs. Making sure that patients get this quality care in the hospital setting is crucially important, both for acute and long-term health outcomes.

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