Squeaky Wheels Needed at the Hospital

Last week I managed to inhale a piece of peanut. After 24 hours of croupy coughing my doctor sent me to the ER. I ended up hospitalized overnight, mostly because the doctor assumed that since I had diabetes I must be having a heart attack--which I wasn't. But during the night and morning I spent at the hospital the diabetes treatment I received was so terrible that I took my own advice and wrote a long letter to the Hospital's President and M.D. Patient care director detailing the problems with their diabetes treatment.

The problems I listed were these:

1. While each room had two brand new flat screen TVs, the blood sugar meter the nurse was using was a 5 year old Medisense meter that took a huge drop of blood, took 45 seconds to get a reading and was off by almost 50% from the value I got on my own Ultra 2 which had matched the previous night's lab draw very closely.

The nurse told me that my blood sugar of 79 was "heading for a hypo" and offered me orange juice when my Ultra read 115 mg/dl.

2. The nurse gave me a shot of insulin in a needle that must have been a 25 gauge or worse. It hurt like heck and left a huge bruise. Since many people's first exposure to insulin in in the hospital, I can see why so many Type 2s who first encounter insulin in the hospital will go to any length to avoid insulin.

3. The food I was given was from what called itself a "Carb Controlled Diabetes" menu. The "Control" in this case appears to mean that they made it impossible for you to eat anything BUT carbs. Breakfast offerings were French toast, pancakes, commercial breakfast cereal with extra high carb skim milk, toast and something they called "eggs" which when ordered turned out to be about 2 tablespoons of a powdered abomination that smelled strongly of sulfur and were so sickening I couldn't eat them. The toast came with a choice of low fat cream cheese, margarine or jelly.

To add insult to injury, when I asked for Peanut butter, what I got was fully hydrogenated and contained molasses. I was also told I could not have coffee with caffeine and when I protested the menu the Hospitalist M.D. assigned to my care lectured me about the importance of eating a low fat diet for the rest of my life to control my diabetes.

Well, I know that the hospitals in my region are locked in competition with each other for patients, because they run a lot of ads in the local newspaper touting their services. So I figured the best thing I could do would be to explain to hospital management why I was going to have to tell my diabetic friends that as far as this hospital was concerned "good control stops at the hospital door."

Yesterday I received a phone call from the M.D. in charge of their ER services who had been given my complaint by the head of Patient Care. He started off the conversation by telling me that his wife was a Pediatric Endocrinologist and that he had shown her my letter before calling me.

He said that she had thought my criticisms to be completely on target. She told him the Ultra was the most accurate meter available and that it was likely the old meters they were using were inaccurate. She added that she told her patients to bring their own needles to the hospital because the ones used there were so horrible, and she asked why the menu provided did not give the carb counts of the various foods and allow patients to eat at the carb level they were supposed to be eating at!

The doctor/administrator and I had a long talk, during which he accessed my What They Don't Tell You About Diabetes web site and I reminded him of the research showing the relationship of A1c and post-prandial blood sugar to heart attack risk and mortality (since he was an ER guy) and reminded him, too, of the WHI data that has discredited the low fat/high carb diet as a way of preventing heart disease.

He promised me that something would be done about the problems in his hospital that I'd identified and said that he would get back to me about the progress. I'm not hoping for miracles. They'll probably have to hear from a lot more patients before things change, and the quality of care in my region is such that most people with diabetes are still following the ADA's outdated advice that 180 mg/dl post meals is a great blood sugar and they are eating the ADA's sponsor's beloved high starch/high sugar diet so I don't expect a lot of people to complain.

But I learned a couple things from this experience:

1. Don't wait until you are in the hospital to find out what your local hospital's policy is about diabetes treatment--especially if you use insulin. Write a letter NOW to the M.D. administrator in charge of patient care at your local hospitals and ask them the following.

a. If I am hospitalized but conscious, will I be allowed to retain my own blood sugar testing supplies, and insulin needles? Will I be allowed to administer my own insulin using the doses I set? Will I be allowed to keep wearing my insulin pump?

I have heard horror stories of nurses removing pumps and giving generic insulin doses to people with Type 1. None of the nurses in my local hospital's cardiac ward had ever heard of the "insulin/carb ratio" nor did they know anything about Basal/Bolus insulin regimens. I was allowed to use my own Novolog pen, which I'd brought along, and to set my own Lantus dose (though they provided the Lantus which came in their railroad spike needle) but not all hospitals will allow patients to do this.

b. If I am not conscious, what is the blood sugar target your staff will use when administering insulin to me? Will they consult with my endocrinologist or PCP about my insulin dosing?

c. What kind of meters does your nursing staff use. How old are they? How often are they calibrated with the lab results?

d. Is your nutrition staff aware of the data that has emerged in the past decade which finds that the very low carbohydrate diet is both safe and very effective for controlling diabetic blood sugars? Do your nutritionists realize that the low fat/high carb diet can provoke dangerously high blood sugars in people with diabetes? When hospitalized will I be allowed to choose my own food or will I be forced to eat the discredited low fat diet that may raise my blood sugar to dangerous levels?

If you are told there is a "carb controlled" menu (as I was) tell them how many grams of carbs the nutritionists prescribe per meal, and state how many grams per meal you eat to maintain your currently excellent level of blood sugar control.

If every hospital started getting letters like this on a steady basis, things would change. I'm old enough to remember when hospital maternity departments actively discouraged new mothers from nursing. We La Leche League ladies changed, that, with a lot of letters, articles in the press, informational meetings with pregnant ladies, and public information campaigns.

Now its time for us folks with diabetes to take on the medical community by making it clear that we will not tolerate substandard care.

The peanut appears to have dissolved on its own. I'm not coughing, though I'm sure the sight of the bill I'm going to get (with my high insurance deductibles) will set me sputtering again. I will just have to write that off as "research costs" as this was educational and, I hope, may help some other folks get better treatment.

But don't wait until your gall bladder acts up or some imbecile rear ends you! Write that letter to your local hospital administration today and make it clear to them what kind of diabetes care you're looking for in the hospital you choose to patronize!