- Physicians greatly overestimate patients' knowledge of process of informed consent and what they are signing.
- Doctors and nurses often overestimate their patients' health literacy and more often literacy in general.
- Doctors overestimate the amount of information they have given to patients about a prescription drug.
- Many diabetes websites for the public assume a grade 9 to college sophomore reading level and a master's degree in comprehension level.
- Many patients don't know the location of the organs their diabetes affects (e.g. pancreas, heart, kidneys).
April 5, 2014
This common bias often means that patients are ignored and families of patients lose, often meaning the lives of loved ones. Sources on the internet are rich with examples of this bias. This blog by Jessie Gruman is a great one on overall health. I will be using it for diabetes.
The extent to which physicians, nurses, health plans and employers overestimate their patients' knowledge about diabetes health concerns:
These same doctors will discourage patients from researching on the internet. They are more concerned about all the misinformation on the internet. Yet, these doctors with over inflated egos are incapable of carrying on an honest communication with their patients. This is a lose – lose situation for their patients.
The effects of this bias and overestimation of our knowledge are profound. This bias leads to a shortage of information we need, not just how or if we learn it. Health literacy is short-changed and confusion is promoted. With most “Ask a Nurse” programs no longer in existence because of the trite answers of, “Go to the emergency department,” to, “Set up an appointment in the morning,” is it not surprising retail and walk-in clinics are thriving.
This same overestimation shows up in the information sheets we receive for surgery preparation. Many of us remain well for quite a few years and often run into the problems when we first need to care for a parent or other relative. Others first encounter problems when we are diagnosed with type 2 diabetes and other chronic conditions, such as cardiovascular disease and hypertension.
Then, as we seek care, we seldom find the knowledge we need to care for diabetes and related health care. It is no wonder it takes us some time to find the information to accomplish our diabetes care tasks efficiently and effectively. As more things are discovered affecting our diabetes care, making it more complex, the responsibility falls to us to keep abreast of these changes.
As the above increases, our doctors fall farther behind and cannot keep up with the latest developments and we are left more on our own. Doctors are reducing the length of appointments and checking less to see whether we are managing our diabetes in a systematic method. They prefer to only look at the A1c results and add more medications for us to take. These medications have more and sometimes severe side effects, but we have them foisted on us with no explanation.
When we dare ask about insulin for better diabetes management, we are chastised for failing to manage our diabetes with oral medications. Some doctors also say that using insulin is our punishment for failing to manage diabetes with oral medications. What they don't realize is that patients are beginning to wake up and realize this says they have not stayed current and do not understand insulin. They do not understand how to determine dosage and even less about preventing hypoglycemia.
The overestimation bias in health professionals and other experts prevents them from truly recognizing the depth of this problem. They can't see our need for knowledge and this prevents them from allocating the resources to solve it. Maybe in our current cost-conscious environment, the cheap old "let 'em sink or swim" approach is preferable to addressing a well-known, well-documented bias that prevents our participation in our own care of diabetes.
What they fail to recognize is that we are, after all, a rather resourceful bunch as patients. Many of us will figure it out. However, there are many, who, for a variety of reasons, simply lack the resources to persist until they are both competent and confident to manage of their diabetes. This is the reason to trust people with experience and to search out empowered patients and utilize them. We, as patients, need to understand that what works for one person may not work for another person.
April 4, 2014
On Monday, March 31, A.J. called and asked if he could come over as he had several things he wanted to discuss. I told him to come on and I would try to answer some of his questions. We talked briefly about some of the activities recently and then he asked me to pull up this article. His comment was that he had not seen me do any blogs from this source and I showed him two that I had already posted and several others that I have been working with.
When I went to open this blog, he asked me to wait. He said that does not have many readers. I said this is one of the things to expect when blogging. He asked me to scroll down the list of previous blogs and he said a lot of them don't have great readership. He said I have read every one, except for today's post, which I will when I am on the computer. I then brought up the statistics page and he said, “oh goodness.”
I said this is expected when people are not interested in something I blog about. Then I went to the audience page and he looked again and commented if it was not for other countries and the readership by them where would you be.
I said this is expected at different times when I write about topics that people are not looking for and have no interest. He said they are of interest to me and I generally find something that may apply in the future. He continued that he had a doctor's appointment earlier that afternoon and he remembered to silence his cell phone after reading that blog.
A.J. then stated the purpose of his visit and that he was very concerned about what the author had stated about there being no benefit for Self-Monitoring of Blood Glucose (SMBG) for non-insulin using people with diabetes. He continued that if he had not been on insulin and learned from the rest of our support group how to use his test results, he might have believed the article. He said that his insurance had limited him to one test strip per day, but he felt fortunate to be able to afford the extra test strips and felt that the investment was well worth the money.
A.J. continued that it was better than operating in the blind and not knowing where his blood glucose levels were at for different times of the day. I stated, let's take the three points and analyze them.
#1. In patients with diabetes who don’t require insulin, self-monitoring of blood glucose had a modest effect on HbA1c levels at six-months, which subsided after 12 months.
I asked him what he thought and he stated he did not understand. I said that the studies used only supplies meters and test strips with no education or minimal education. Once the study ended, no more test strips were provided. Okay, A.J.'s face lit up and he said now that I can understand. They would not have understood what they were looking at and have even less knowledge about how to interpret their readings. I then asked A.J. to read this blog. After he finished, he stated your last thought about why diabetes is then considered progressive really highlights their lack of education.
#2. Self-monitoring of blood glucose in non-insulin treated diabetics had no effect on satisfaction, general well-being or general health-related quality of life.
I brought this blog up and after A.J. read it, he commented that now he had a better understanding of why they could make stupid statements like this. Education is everything and the key to understanding SMBG.
#3. Supplies required for self-monitoring of blood glucose (BG) are more expensive than for urine testing, a common alternative for non-insulin treated diabetics.
Now A.J. was laughing. Peeing on a test strip is not very accurate and almost worthless. He said he had a friend that used them for another purpose, but had the guide for blood glucose as well and he had tested a couple. The color of the test strip was higher after the meal, but he had no true meaning for the result. If it had not been for his meter and test strips, he would still not know the true meaning of the results.
Then when A.J. read the paragraph after the three points, he stated how idiotic the studies sounded. This is the paragraph, “For type 2 diabetics who are not on insulin, monitoring their blood sugar does little to control blood sugar levels over time and may not be worth the effort or expense, according to a new evidence review.”
I asked A.J. if he had not curtailed the number of times he was testing now that he was off medications. He admitted that he had, but did test at least after the evening meal to know what his BG level was. He said he still keeps his food log and stress log and this helps him when his AM fasting test is high and the postprandial test was higher than he wanted.
Then A.J. asked why he did not remember my blogs and others that would help keep him from being so concerned when he read articles like this. I said because he is only reading and not writing blogs.
We talked for another 30 minutes and he asked to read several of the other blogs the search on my site had collected. When he came to this blog and then read a link in it, he said this even gives more of a reason the discredit the Cochrane Review. I said they still like to trot this out every few years and make their pronouncements. I said there are just too many pieces of information that they leave out.
A.J. said it was time to get for home and eat, but he thanked me for giving him something to think over.
April 3, 2014
The next day, I arrived just after my friend's wife had pulled into the driveway. She was starting to unload the groceries and I helped them. My friend said their son would be there shortly and there would be a lot to do with new software and a new laptop. No sooner said than the son was home. The next three hours were spent installing software and a new hard drive in his mother's computer. After that was completed, he set up the laptop.
The rest of the evening was spent talking about different software and the son set up a network for the three computers to access data from any computer. When I said I needed to leave, my friend wanted me to come the next day to teach his wife and him how to find reliable web sites. I said I had household tasks to be completed and that I could assist most evenings the following week. He asked if I could come Tuesday evening. His wife agreed and I said okay, as this would allow me some time to research.
On Tuesday, the wife had announced that she and her husband had taken time to look at the medications they were taking and were both going to talk to the pharmacist about potential conflicts and then if there were any found, they would need to have a talk with their doctors. My friend added that he had stopped taking a few supplements after they had spent time looking at the University of Oregon website I had given them. His wife continued that even she had stopped two of her supplements.
I then suggested that they both have tests done for those they were continuing to take to determine if there was a need. The wife said that after reading several of my blogs on metformin and vitamin B12, she was definitely asking for the test for vitamin B12 and vitamin D. By doing this, both would have a baseline for future reference and even if she did not think there were problems presently, they would know what to look for in the future. She said they had found some recent lab results and her husband was in need of a vitamin D supplement.
I then suggested they always ask for their lab results and look carefully at the results and the normal range recommended. She said that her husband's doctor seemed to give him a copy, but she had never asked and her doctor hadn't been giving her a copy. I asked her if she had a calendar with her appointments or a diary of her appointments. She said she had a diary.
I suggested that she write a form requesting the lab results for the prior two years. Address it to the doctor and then ask for the lab results by date or date range if unknown. Sign and date the notice and then go to the doctor's office and request a form to complete. Once completed ask if you can attach your list, but don't be upset if they ask you to transfer the information to their form. This is often a way to discourage you from asking. I continued that many offices will ask for a fee up front or before they give the information to you. They will require you to do this in person and you should obtain a copy of the request. Do not be surprised if they take the full 30 days.
I added that on the last day, always resubmit a copy of the request saying the date originally requested and that this is now 30 days later. Also, state that you are contacting the Department of Health and Human Services, Office of Civil Rights (OCR) and detailing their lack of action. If it takes this, you must have copies of all your actions and dates, carefully follow the instructions and submit your claim.
I could see we were running out of time and asked them to pull up the following links and bookmark or add them to favorites. The first is this link and the second is this link. They did and I reminded them that they contained excellent pointers and even if they were worried that they did not say diabetes, I would send them some links later. I stated that the two links also had other links and most would apply to diabetes even though they were about health in general.
My friend and I talked a little longer and the wife was reading in both links and politely interrupted. She said these sound as if we should not pay attention to bloggers. I said that is true as we are not medical professionals. I said we could only suggest items of interest and talk about our experiences. Then it depends on what you perceive as being reliable and often what you can find on other sources that are reliable that confirms what we suggest. I added that is why I use links to let people do their own reading and if they agree, they will be more apt to follow my blog.
Oh, she said, that is why you say “what works for me, may not work for you.” Yes, and when you see “your mileage may vary,” this means about the same, or that the results you receive may be different from the results I received. I said it is like selecting cars, each obtains different mileage per gallon of gas. The husband said as long as we can email you with questions, then we should be able to find answers.
I said yes, and excused myself and left.
April 2, 2014
I am surprised that I have been asked to do this blog. Two of our support group, Barry and Jack had an unusual meeting with a certified diabetes educator (CDE) and were both told to go back on oral medications. Both questioned why and were told that they were managing their diabetes too well and this CDE felt they should come off insulin and return to oral medications.
In addition, they were told that they were not consuming enough carbohydrates and would have problems if they didn't start consuming more. They she had quizzed them about the amount of fat they were eating and said they should be eating low fat as fat was not good for them. Jack said they both laughed at her and said they were not going to change. The low carb/high fat food plan they were eating was making their diabetes easier to manage and the insulin was helping them manage their diabetes.
Barry asked her why they should change when they were having success and their latest A1c's were both 5.4%. She promptly asked if they recently had a hypoglycemia episode. Both had answered nothing below 65 mg/dl and both declared they realized that the upper limit was 70 mg/dl, but they were not concerned about a few readings in the 65 to 70 range.
Jack said that she chastised them for being under 90 mg/dl. She felt that for their age this should be the lower limit. Barry said she continued that they should both have A1c's near or above 7.0%. Jack said he became a little hostile and told her she was out of line and that her one-size-fits-all solution meant that she had not properly assessed them and their abilities to manage diabetes on an individual basis.
When she would not back down from her decision, both got up and left saying they were not round pegs she could fit into her square holes. They knew from testing that they were capable of managing their diabetes and would not listen to what she was mandating.
Barry said he remembered a blog I had written back June 2012 and said something about CDEs not having a proper perspective on people with type 2 diabetes. I had him look at this blog, and he said that is the one. Jack read it and said that summarized his feelings as well and that is why he was intending to ignore her advice. Jack added that her one-size-fits-all advice was not for them and he did not like the way she had come across to them.
Jack added that I had another blog back in 2011 that said something about knowledge about diabetes being power. I pulled this blog up and he said yes. He said that if I would put the URLs in an email to him, he would email our group about what had transpired and how we should avoid CDEs that could not individualize plans or do proper assessments.
Barry said that their doctor had suggested seeing her because she was new to the area and they could make use of the two hours of education allowed by Medicare. Barry said they had only used less that an hour and they were going to tell their doctor not to send other patients. People with type 2 diabetes and well managed were going to be very disappointed. I suggested that they explain her push for high carb/low fat when the were doing the opposite. Jack said he would as it was the doctor that had suggested this in the first place.
Late the next day, Barry called to say that was exactly what his doctor wanted to hear and now he would not be sending other patients. Barry said that was why he sent two of his well managed type 2 patients. Barry said he had even sent one of his type 1 patients and the CDE wanted him to consider stopping the pump. Barry asked if this was for a short vacation and the doctor had said permanently.
Barry told me the doctor had said there is a need for a CDE, but not one so far behind in her education, out of touch with doing an accurate assessment, and one that would advise a patient to abandon a pump.
April 1, 2014
No, this is not an April fools joke. Not going to admit it are you? I can just about guess that at sometime, one of my readers has done this on the sly. And, I don't blame you for not saying anything because of fear of retaliation. This blog is from an idea I read in the Health Care Blog. The author states that the doctor name is fictitious, but the article is based on data from an online discussion from the UK Consumer Action Group. The blog originally appeared in the British Medical Journal.
Would I do this? I am seriously considering it and may at some time in the future. I have a great miniature digital recorder that has excellent sound pickup qualities that I have used for other activities, but had not really thought about recording the conversation in the doctor's office.
The blog was very enlightening about the reactions from a doctor's point of view and how this is playing out in the period following the posting. The comments to the blog in Health Care are also very revealing and this came to light. Carecoach is already providing a service to record the conversation in a doctor's office.
From a purely legal perspective, I have not found a reference to confirm several comments about the legal requirements varying among the different states. Would we need a signed waiver? Would we need to have just a verbal consent? The above link may have the answers, but you would need to contact them. This link may answer a few questions, but does not have a state specific discussion. My answer is when in doubt – don't record.
I could see a few advantages and a few disadvantages. It would be a huge advantage for patients that have a difficult time concentrating and by reviewing what they were told could prevent mistakes on their part. It could also be used to prevent them from saying the doctor never told them something.
When you asked the doctor a question, you would know if you received an answer and not have to rely on memory. You would also know when a doctor only partially answered a question. When you know that a doctor answered a question, you could review the answer to make sure you did not miss something important.
Many people are nervous when they are in the doctor's exam room. They often do not understand something they were instructed to do. I also know a friend that has his wife accompany him on doctor visits. He hears one thing and his wife hears another. And they do have some heated discussions afterward. A recording could settle these disagreements.
Okay, but you say what about doctor-patient trust? Yes, if approached in an unfriendly manner, I can understand a doctor becoming upset. Even if you explain that you have missed things in the past and are having memory problems, some doctors will still become hostile.
I am aware of one doctor that does record his time with some patients. He knows that they have memory problems and does this as a way of providing them a recording for them to review. He does make sure that they have the equipment to listen to the recording. He even makes a duplicate for himself to play if the patient calls and does not understand something.
There are many pros and cons, but this may have its uses.
March 31, 2014
- The administration of many drugs at the same time.
Don't forget that the term drugs also includes herbal remedies, vitamins, minerals, and other supplements. Often they are referred to as dietary supplements, but they are still drugs.
Normally this is a concern of the elderly. However, last Friday, I was in the house of a friend as he was sitting down for the evening meal. His wife was at the side table with her back to us. I could not be sure what she was doing until she seated herself at the table. She had one container for herself and a slightly larger one for her husband, each containing many pills.
Both are in their early 40's and I thought to myself, they are too young to be taking this many medications. Sure, I take 9 pills at breakfast and the same at bedtime and then insulin injections of two types. However, I am about 30 years their senior.
After they had finished eating, he and I headed for his workshop. Once there, I asked how many pills he took in a day. He said they were not all medications and that only eight were prescription. He said the rest are dietary supplements. I asked if any of them were prescribed and he said only one – vitamin D.
I helped him figure out the woodworking project he was making and gave him alternatives for making it stronger. We continued talking until he was satisfied and drawing different diagrams for the needed joinery. Then we went inside to his computer where I showed him where I had gotten my ideas and he looked at the explanations for several and bookmarked the page.
Next, I asked if he would read something that I had written about vitamin D. He moved over so I could access the keyboard and mouse. First, I brought up this blog and after he had read it, he called his wife and asked her to read it. Her first question was why the doctor needed to prescribe it if there was something less expensive. She went to the cabinet and brought the bottle over. She said this is definitely D2.
Now she wanted more information and went to her computer. I brought up the blog for her and when she went to the bottom and clicked on the University of Oregon link, she asked where to go. I told her to click on vitamins and she said they have something on all of these. More of a question, but she went to one other and was reading that. She bookmarked that and went to back to find the minerals. Then she asked her husband if he has been tested for selenium and he said no.
Now she said they had better do some reading and check out the rest that they were taking. I suggested that they also read the problems or cautions for use with prescriptions. She said that was what she was concerned about. She asked if I had any other suggestions and I gave her this blog, which she quickly bookmarked.
Then she asked for my email address saying she would probably have more questions. She sent me an email with her and her husband's email so that I would have them. Then she took time to read some of the other information on my blog page and asked if that was why I blogged. I admitted that because of diabetes and felt that it was important to pass on information to others.
Then I was shocked when she said she had just been diagnosed with type 2 diabetes the day before. I asked her if she had gestational diabetes with their two children and she said only the second one. She continued that the doctor had not believed her plasma blood glucose level and did an A1c and even then would not say she had diabetes. Next, she went through the oral glucose tolerance test. After two hours of that, the doctor finally said she had type 2 diabetes.
The husband said it was getting late and his wife had some errands to take care of the next day. He asked if I could come back after I took my wife to work. He said they needed to learn more about using the computer. As it was, they mostly used it for video and chatting with family and the children at college. I agreed and said goodbye.