December 14, 2007

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!

8 comments:

Anna said...

This is *very* good advice. In October my husband went to Urgent Care with abdominal pain and ended up staying a long weekend for an appendectomy and IV antibiotic treatment for diverticulitis. While his hospital room had a great view of the world famous Torrey Pines golf course (that doesn't excite my husband, though, he hates golf) and the Pacific Ocean (even that got boring), plus the new flat screen TV, too, the food was awful and in my opinion, downright unhealthful.

Every single thing he was served was a packaged single serve item made in a factory somewhere, not even in the hospital kitchen. Initially he was on liquids only, so they brought bullion broth that they mix up with hot water, no coffee. Then they brought some sort of jello-like thing, but it wasn't even gelatin because it was vegetarian carageenan based. The "yogurt" was Yoplait yogurt mouse and nothing like real yogurt. Other items what we never consume: little cartons of ultrapasteurized non-fat milk, Cheerios (gives me my highest food BG tests), etc. I don't even think he had anything that wasn't from a single serve package. He ate as litle of it as possible. When they finally allowed him coffee with cream, it came with a packet of non-dairy creamer powder and he decided to wait on the coffee. My husband is an espresso drinker and couldn't go that low, both instant coffee and fake creamer.

First they were bringing the AHA menu, which is wha the doctor ordered I think. My husband complained about how it was so full of sugar, so they got the Drs ok, then they brought the ADA menu, which was just as bad (worse if the patient was diabetic), but now with artificial sweetners and more starch. My husband isn't even diabetic but this food wasn't fit for anyone. Most of it probably didn't even need refrigeration for storage, except for consistency and people's expectations that certain things be chilled.

If I had known that I could do this, I would have prepared all his meals and brought them from home. That would probably have ruffled some nurses' feathers, but so be it. I know better now. I had chicken bones simmering for broth ready for him when he came home, in addition to lots of great probiotics (in much higher numbers and range of strains than in yogurt). He bounced back very well at home.

Nicky. said...

Good grief - that sounds dire! Glad you're out of there in one piece - and at least that administrator listened. Maybe with his wife backing you, he's got all the impetus he needs to start talking about changes!

Jen said...

The truly infuriating and frightening thing about all this is that when you are seriously ill, injured, or having surgery, it is even more important to maintain excellent control. Study after study shows that poor blood sugar control (even in those not diagnosed with diabetes!) increases infection, morbidity, and mortality in ICUs, after heart surgery, etc. Stress alone (and hospitalization is a severe stressor) causes blood sugar to soar in many individuals, never mind the effects of trauma, infection, or surgery. Add to that the horrible food and inept diabetes treatment, and it's a wonder anyone with diabetes gets out alive. Prior planning is absolutely essential.

Jenny said...

Jen,

I could NOT agree with you more!

Please, people. WRITE THE LETTER to the Dr. in charge of Patient Care at your local hospital. Send a copy to the president of the hospital. It could make a huge difference.

nonegiven said...

A while back my dad had a triple bypass in a hospital about 45 miles from here. The menus weren't that good but their diabetes coordinator gave him insulin and said the target was 120mg/dl (I just hope that wasn't fasting only.)

joel said...

Well done Jenny! let's all try to get the hospital community into the 21st century!

gglndmtns said...

thx for the heads up! have a story on my recent colon resection hospitalization.
my issues?
terrible dietary service and insistence in giving me insulin.

i am diet controlled diabetic. no meds at at all. (once tried oral but due to serious sulfa allergy the med was stopped and no other tried)
i gave detailed spread sheet listing all my meds w/ rxg doctors the list included otc and dietary supplements.
i also listed known allergies and sensitivities along with verified diagnosed conditions.)ie myelopathy,neurogenic bladder etc) so i figured had the bases covered...wrong!

i had complications in recovery and wierd seizure-like episodes post-0p. speech, involuntary movements etc. we are not sure the cause.
i was told my bg at one point in recovery room bg was at 40. this is the lowest i have ever experienced.

post0p, they kept wanting me to take insulin.
one time it was for my room mate a very serious diabetic (400's+)
dietary:

a full fourth of the patients on this hospital floor (heart/post surg) failed to recieve nutrition as ordered. incomplete or totally wrong items sent up. this was my entire stay.

the young (in training) detician kept appologising and assured us that she was trying to correct the situation.

standard to colon resection (lap asstd)surgery, i was npo on iv only then on to liquids. these liquids were a steady flow of reg sodas (yikes so not good for my gerd too), jellos, lots of juices and popsicles. this is bound to mess up even non-diabetic persons readings.

the nurses kept wanting to give me these insulin shots and i kept saying no thx.
one reading after meal was at 150. not bad i thought.

then one time they said well my bg was realy low (fasting at 74) that is pretty close to my reg numbers of 80's at home. and rembering no reg food given.

my first real meal of solid food?
a greasy sloppy joe on white bread! that was payback with bad indigestion etc. there was pleanty of starches to follow...puddings noodles some kind of fruit ice ,rice, cereals, milk ,brocolli (not easy on newly sewn colon).

glad to be at home.
if i screw up with less than healthy choices then it is certainly my fault. however if medical institutions and professionals are lagging behind in treatment protocols then we all better 'wake up'.

hindsight?
whether it is diabetes or another co-morbid condition, it pays to educate your support system. Have family, friend, etc with you as much as possible.

ask questions and be satisfied with the responses. if not let that wheel squeek to the high heavens till the driver gets off his horse and fixes the problem.

thx again.
from the mtntop

lovingcritters said...

My thanks to David Mendosa for giving me your link. He also writes about the same subject at:
http://www.healthcentral.com/diabetes/c/17/109566/hospitals-control

"Rally Round all Fellow Big "D's!" We have to take on the Medical World, and the only way to do that is to write letters, and more letters.

I'm 73 years old, had diabetes for about 2 years. I also suffer from Neuropathy.

I have been in two hospitals, in one week, one in Wyoming, and Colorado. I had cellulitis on my right foot, and sat all day in the hospital here in Cheyenne, and no one even looked at my foot. This was on Friday, and their "Wound Team" would not return until Monday. I'm an avid reader, and realized that my ailment could be very serious, indeed! My son finally had to come get me. We walked out without signing anything, and although I was in horrific pain at the time, and itching horribly from the antibiotics they gave me, the nurse refused to give me the Benadryl pill she had brought for me, because I refused to sign the papers! Bummer!!!

My son then drove me to Loveland, CO to the new "State of the Art" facility there. I have always been very strict with my diet. I'm a Big D One, and after reading "Dr. Bernstein's Solutions for Diabetis" I control my blood with diet and exercise. I was allergic to the diabetic medications.

When you have to go to the hospital,
remember to take your own bread. I did, with my own paanut butter. I ordered a regular diet and ate their baked fish for breakfast, lunch and dinner. I was doing quite well, until they started the IV's and they gave me one with 5% Dextrose. My blood soared to 157!!!! I had demanded that I would do my own BG. When I realized they had spiked my blood I called them for it, and this is what took place.
I said, "Why are you hanging sugar over me when you know I'm a diabetic?"
The nurse said, "We'll just give you insulin to bring it down."
I said, "Insulin? I've never taken insulin in my whole diabetic life!!!" I wouldn't know how much to take, and neither would you!"
They said, "Are you refusing treatment with insulin?"
Now I ask you, how do you answer such a question? If I say "Yes," and my blood goes too low, they will let me go into a coma and die!!!!
Going to the hospital now-a-days is just like going to War. You have to get in and out as fast as you can, before they kill you! It's a terribly unsafe battlefield for Big D's, as their Drs. and their nurses don't know a thing about Diabetes. I was really frightened after that, and even afraid to sleep, not knowing what they might give me or not give me next!!!
If you are on Medicare such as I am then please write to this address:

Mountain Pacific Quality Health
3404 Cooney Dr.
Helena, Montana
57602
Attention: Complaint Coordinator

If you are not on Medicare please write:

JOINT COMMISSION:
Office of Quality Monitoring
The Joint Commission
One Renaissance Boulevard
Oakbrook Terrace, IL 60171

The only way to bring the Medical World up to date when it comes to Diabetes is to write letters, and more letters!
They should be ashamed of themselves for not knowing everything there is to know about we Big D's! More and more of us are coming into their hospitals, and we must do everything we can to make sure they get Quality Care instead of the wrong kind of care, or no care at all!

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." And I will add, "A short letter"
~Leo F. Buscaglia~

Show your fellow Big D's that you really care for them. Sit down and write your letter today. I wrote two last week.

A Big D Survivor
Lovingcritters
csz1914@msn.com
Email me and I'll send you a copy of the letters I wrote.