I have always done everything I can to avoid hospitalization. Aside from concern about potential surprise bills, it’s a control thing: I’ve simply been afraid of turning over care of my blood glucose levels to anyone else. I’ve had numerous outpatient surgeries and procedures, but for the nearly three decades since I was diagnosed with type 1 diabetes in my mid-20s, I never spent a night in a hospital.
In retrospect, the one time I should have accepted hospital admission was immediately following the shock of the diagnosis, which followed close on several months of unexplained weight loss, increasingly unbearable thirst, blurring vision, and general disorientation. My blood glucose level had been off the charts, plus I needed time to reckon with the loss of freedom for my always more or less healthy and fit body and to begin to learn to balance insulin shots, glucose levels, food intake, physical activity, and much else. But I was in denial (with predictable consequences) for quite some time afterward, and had also turned down the cost of health insurance when entering graduate school.
In the hospital.
In any case, one frigid, iced-over night this early January, I broke one of my cardinal rules (‘only go to the ER if you have a broken bone’) and went to an emergency room in the small upstate New York city where I live. After a long night being monitored in the very active Saturday night ER, I was admitted for observation because of various cardiac and neurological symptoms secondary to a fairly recent case of Covid (that had been quickly followed by a bad concussion).
My fear of turning over control of my blood sugar levels to anyone else had been based for all those years on my observation that most people in the world don’t know the difference between type 1 and type 2 diabetes (I’ve had people tell me many times that I just need to stop eating gluten, or try turmeric, and I’ll be cured…despite the fact that my body lost all its insulin-producing cells decades ago when attacked by its own immune system). To be fair, I probably wouldn’t bother to know the difference either if I didn’t have to deal with it all the time!
I’ve also encountered quite a few health care professionals over the years who don’t know very much about type 1 diabetes, in particular the complexities of managing glucose levels on a 24/7 basis to keep them within a range over the decades that won’t cost me my eyesight, kidneys, and so on, while also avoiding dangerous and exhausting hypo- and hyperglycemic incidents. This too is mostly understandable for clinicians who don’t specialize in such patients and their concerns.
The care I received during my two days and one full night on that busy hospital unit was professional and competent, and I’m grateful to the nurses and physicians who cared for me. However, right from the beginning I found myself on uncertain territory about whether or not I was allowed to treat my own blood glucose levels.
I’d brought along my two different insulin pens (the actions of various types of basal [long-acting] and bolus [rapid-acting] insulin can vary considerably), and I always have a continuous glucose monitor (CGM) sensor disc attached to the back of my arm to provide me (through a small reader or a cell phone app) with constant easy readings and alarms for highs and lows. Initially, the somewhat stern hospitalist and nurse I dealt with insisted that it was against hospital policy to allow me to have my own insulin or to give myself shots to correct overly high levels overnight between the glucose checks and shots administered at meals. In fact, they said, they really should confiscate my insulin pens if they played it by the book.
Besides the fact that they didn’t yet have any reason to trust me to safely care for myself, I could see that there might be potential liability issues involved for the hospital, so I was agreeable and placating about their concerns, and quietly tucked my insulin pens into a nearby drawer. I wanted to be on good terms with the nurses and aides who were monitoring my cardiac vitals and providing care to some much sicker people.
After that encounter, I found that I had to gently renegotiate my freedom to continue to treat my own blood glucose levels with each new nurse who came on shift. It wasn’t life or death, but it was a source of some anxiety: I didn’t want to get anyone in trouble, and yet I didn’t want to lie there all night in ketoacidosis if, for example, my blood glucose rose unexpectedly to 300 after the white pasta served with the ‘diabetic’ meal at dinner.
Each nurse I encountered had a different style and a different approach to the mildly thorny problem of me. My favorite one, who was about my age, took the time to ascertain that I really knew what I was talking about, then simply agreed (without ever saying it aloud) to look the other way as I injected myself as we happily discussed a book her husband had written and her pursuit of a spot on a traveling pickleball team.
A nearly universal quandary for patients with T1 diabetes.
By the time I was discharged after a battery of cardiac tests, I had a pretty good sense of the ways that the limited blood glucose management protocol practiced on the unit I’d been on could have had potentially dangerous effects such as prolonged hyperglycemia or untreated hypoglycemia if followed to the letter, especially over a longer hospitalization.
When I was at home, out of curiosity I joined an online discussion group for people with type 1, and posed a question about others’ experiences in the hospital over the years. The group explicitly forbids reporters from seeking out sources through the discussion, so I can’t quote anyone here. But the range of responses was overwhelming. I heard some pretty scary stories from some: affronts both to patient autonomy and frightening threats to safety resulting from unbending policies. One nurse wrote to say that she had type 1 diabetes and had been hospitalized numerous times during pregnancy and other times. What she said about the average knowledge of other nurses (except those in endocrinology and pediatrics) about glucose management for patients with type 1 diabetes was not encouraging.
The policies about diabetes self-management in the hospital seem to be more enlightened in the UK, and nurses there may therefore be better trained on the nuances of diabetes care. Some patients, chiefly those who use insulin pumps, had better experiences to describe, since some hospital policies allow for their use. But few in the United States felt that policies were clear or consistent, and nearly everyone’s take was that for people with T1 diabetes, the best move is to stay out of the hospital if possible.
Is it possible to do better?
Since then, I’ve done a bit of research into the complex web of guidelines and policies and financial and staffing realities that affect the care that people with diabetes receive in the hospital and whether they are allowed a role in glucose self-management. There are some bright spots, and some very big obstacles remaining. With this in mind, I’m writing an AJN Reports on this topic for our September issue, and am looking for stories, either from patients or nurses, about their own experiences related to this issue. Please contact me soon if you are interested in talking briefly, or know someone who is: email@example.com
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