If you have diabetes and are forced to go to a hospital, emergency room, or nursing home for any reason at all, you may find yourself plunged into a situation where well-intentioned but ignorant medical professionals do all they can to destroy your blood sugar control.
Because none of us know when we may be the victim of an accident or disease, every person with diabetes must prepare a "Medical Instruction Letter" signed by the doctor who gives you your diabetes care that describes in detail the treatment you must receive if you are hospitalized or put into a nursing home.
The Problem: Institutional Policies Trump Patient RightsMedical institutions have one overriding concern, and no, it is not that you recover your health. It is that they not be sued. They do this by adhering to guidelines set by organizations like The American Heart Association and the American Diabetes Association.
Unfortunately, these organizations, which are funded primarily by drug makers and junk food companies, promote outdated and discredited treatment guidelines such as recommending the discredited low fat/high carb diet to prevent and treat heart disease and defining "tight control" as a two hour postprandial reading of 180 mg/dl (10 mmol/L) and warning that this level of "tight control" may be dangerous for patients on insulin.
As a result, most hospitals and nursing homes have policies that force patients with diabetes to eat a high carb/low fat diet that pushes up their blood sugars. They also use old, outdated insulin dosing schemes which guarantee that patients attain post-meal blood sugars near 180 mg/dl and high fasting blood sugars. Many still use two shot a day 70/30 insulin regimens. Most make no attempt to match carb intake to insulin dose.
If your doctor does not make nursing home visits, you may find that a doctor who does gives week to week instructions to the staff that take care of you, usually a doctor who has no specialized training in the care of diabetes or who subscribes to the ADA's outdated advice.
Your Doctor No Longer Treats You At the HospitalOver the past decade most hospitals have moved from the old-fashioned system where if you were admitted to a hospital your own doctor visited you and dictated your treatment to a new system where a doctor called a hospitalist has complete control of your fate when you are hospitalized for anything but surgery.
The hospitalist works only in the hospital and has no idea who you are or, in many cases, what treatment your regular doctor prescribed. They may not have access to your medical records, and most importantly, they are not well-trained in the treatment of diabetes and are likely to treat diabetes using insulin protocols and dietary approaches that have long been abandoned by diabetes specialists, preferring those advanced by the ADA and AHA.
What Can Go Wrong?Should you find yourself in the hospital, the problems you may run into may range from the annoying--like being told you can't have caffeinated coffee because it is not "heart healthy" to the terrifying, such as having your insulin pump removed and your insulin dosage put under the control of a nurse who uses the discredited old fashioned "sliding scale" method of insulin dosing.
If you are on insulin, you may be forbidden to administer your own shots and be at the mercy of nurses who use one inch long ultra thick 25 guage needles. You may be prohibted from testing your own blood sugar and have to rely on nurses who are using older, no longer accurate blood sugar meters.
On a recent trip to the hospital (after an accident) the meter the nurse used on me read 79 mg/dl when my Ultra read 115. The Ultra matched within 6 mg/dl the blood sugar the lab reported for me on admission, so I knew it was accurate Based on her innaccurate meter reading nurse suggested I should be treated for a hypo--which would have meant drinking a 4 ounce glass of orange juice! I didn't, because, as you may have inferred, I'm a stubborn cuss, but I wasn't seriously ill and thus had the energy needed to resist.
Even worse, doctors who see the word "diabetes" on your chart may assume you have heart disease and, as happened to me, ignore the reason you were sent to the hospital and instead order expensive and unnecessary tests to discover whether you have had a heart attack because as they will explain that's what they expect of people with diabetes no matter how good their control.
Don't Expect ANYTHING You Say to Be RespectedOnce you are signed into a hospital or nursing home, nothing you say will have any effect at all on your treatment, because the hospital and nursing home culture is one where only "Doctor's Orders" prevail.
If the hospitalist assigned your care believes that you should be eating a high carb/low fat diet, that's what you will be served. If they believe you should be given insulin on a sliding scale, that's what you'll be given. The only option you have in this situation is to sign out of the hospital, often with the words "against medical advice" put into your medical records. This is not feasible if you are in the hospital because of an accident or surgery.
The Doctor's Letter You Need to Protect YourselfThe best protection you have against this situation is a letter which you draw up before you need it You must have it put on your doctor's stationary and signed by your regular doctor. This letter should be entered into your medical records at your local hospital and ideally you should carry a copy or have your next of kin bring it to the hospital as soon as you are admitted.
Here's what you want your hospital letter to say:
1. Have your doctor state that you are a highly compliant patient whose diabetes control is excellent and or exemplary. State your A1c if it is under 6%.
2. Have the doctor describe the diet that you should be placed on should you be hospitalized. If you are eating a low carb diet, it is not enough to say you are eating a "carb restricted" diet. The supposedly "Carb restricted diabetes diet" my hospital provided was a very low fat diet which provided 50 grams of carbs per meal. The nutrition department was not allowed to provide any non-low fat foods to me. All cheese was low fat (higher carb) and the eggs were powdered with the cholesterol removed and the serving was less than the size of one egg. The only peanut butter provided was made with fully hydrogenated oil and molasses. Caffeinated coffee was prohibited. Protein amounts per meal were very low, which would be a serious concern if you were undergoing surgery or healing from a wound.
To avoid being put on this kind of dangerous "diabetes diet", you must have your doctor specify that you should be given a diet whose percentage of fat, protein, and carbs per meal is specified. If you want regular coffee have the doctor authorize this in writing.
3. Have the doctor specify that if you are conscious you should be in charge of administering your own insulin and that you be allowed to do your own blood sugar testing using your own equipment. Otherwise you may have your insulin and blood testing supplies removed at admission.
4. If you use an insulin pump have the doctor stress that if you are conscious you should not have your pump removed and that you should be given complete freedom to control your insulin doses.
Unfortunately, if you are not conscious, you will be at the mercy of your local hospital staff. Discuss this problem with your doctor and ask for their suggestions for how it can be dealt with.
5. Create a second letter on your own letterhead which states that you have entered your doctor's instructions about your diabetes treatment into the medical record and that any deviation from the treatment your doctor has prescribed must be cleared with your personal doctor and the reason for the change documented in writing and provided, on request, to your doctor and yourself.
Changing the Medical CultureIf you are hospitalized or placed in a nursing home, write to the president of the hospital detailing any problems you ran into maintaining your usual level of excellent diabetes control due to outdated hospital policies.
Hospitals compete for customers, so they will not change their policies unless they hear from a lot of customers that they are going to take their business elsewhere.
If you are looking for a nursing home for yourself or a loved one with diabetes demand to meet a representative of the nutritional staff and explain why you will not consider any placement where your loved one is unable to continue eating the diabetes diet they and their family prefer. Also demand to speak to the head of the nursing staff about the policies in place for using insulin for patients with your kind of diabetes, before you commit to the placement. Nursing homes also compete for patients and until they perceive that they are losing patients thanks to outdated policies, they won't change those policies.
Our model for improving hospital care for people with diabetes should be the valiant efforts of the breastfeeding mothers of the 1970s and 80s who were faced with a hospital culture that at the time promoted policies that made it difficult or impossible for new mothers to breastfeed. Their efforts have completely changed that situation. But the struggle of people with diabetes to receive good treatment while hospitalized or in a nursing home has just begun.